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Topic: Hi Again! (Read 336 times) |
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myfreaknhead
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I posted a while back when I first found this site. Since then I've found a decent Neuro, am highly medicated and have been (nearly) pain-free for two months. Yippee!
I learned that I actually have Cluster Tic Syndrome, hence the "NEARLY pain-free." The Trigeminal Neuralgia still kicks in once in a while (mostly at night) but I noticed that, too, is all but gone. Any other CTSers around? I'd like to compare notes. Also, if anyone has any really great medical info on the condition, I need some printouts for an upcoming legal matter. TIA.
Anyhow, I love this site; I visit far more often than I ever post, but I'd like to try to stay more connected. As you all know, CH is such a lonely disease <waah> especially when you're a (relatively) young female who doesn't have skin flaps, or look like a lion, or, whatever... 
I really hope to have an opportunity to meet some of you IRL sometime (I'm in NH). Take care, everyone!
~Teri
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Langa
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Re: Hi Again!
« Reply #1 on: Jan 19th, 2005, 11:18am » |
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Hi Teri:
Great news about being PF! What meds are you on? Just curious.
CH is definitely a lonely disease and that's why a site like this is so wonderful. By the way, I don't look like a lion either...Or at least I don't think so... 
Langa
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When you saw only one set of footprints, it was then that I carried you.
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myfreaknhead
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Re: Hi Again!
« Reply #2 on: Jan 19th, 2005, 1:47pm » |
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on Jan 19th, 2005, 11:18am, Langa wrote:
Hi Teri:
Great news about being PF! What meds are you on? Just curious.
CH is definitely a lonely disease and that's why a site like this is so wonderful. By the way, I don't look like a lion either...Or at least I don't think so...
Langa |
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LOL! Kinda odd how they came up with CH "features." Not sure I even know what the heck that's supposed to look like. But I suppose we should be greatful we do not seem to be afflicted. 
I started Prednasone and Depakote at the same time and the cycle ended within 3 days. Stayed on the Depakote (which I hate and am considering stopping). Also taking Effexor. Have Darvocet and Ketoprophen for less severe attacks (that hot, achy, sick feeling), and Cogentin for side effects. For the full-blown attacks I use the Imitrex auto-inject; it works about half the time. Tried oxygen at the ER a few times, but I'm not sure it did much for me. Also had DHE with Morphine a couple of times.
Not sure what will happen with my next cycle, but at least I'm finally armed with some meds and a Dr. who is taking me seriously. I had my first attack 10 years ago; suffered for that long needlessly.  I'm sure that's a familiar story around here.
Nice to meet you, Langa 
~Teri
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Langa
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Re: Hi Again!
« Reply #3 on: Jan 19th, 2005, 2:09pm » |
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on Jan 19th, 2005, 1:47pm, myfreaknhead wrote:
LOL! Kinda odd how they came up with CH "features." Not sure I even know what the heck that's supposed to look like. But I suppose we should be greatful we do not seem to be afflicted.
I started Prednasone and Depakote at the same time and the cycle ended within 3 days. Stayed on the Depakote (which I hate and am considering stopping). Also taking Effexor. Have Darvocet and Ketoprophen for less severe attacks (that hot, achy, sick feeling), and Cogentin for side effects. For the full-blown attacks I use the Imitrex auto-inject; it works about half the time. Tried oxygen at the ER a few times, but I'm not sure it did much for me. Also had DHE with Morphine a couple of times.
Not sure what will happen with my next cycle, but at least I'm finally armed with some meds and a Dr. who is taking me seriously. I had my first attack 10 years ago; suffered for that long needlessly. I'm sure that's a familiar story around here.
Nice to meet you, Langa
~Teri
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That always makes me laugh about the features that CH'ers supposedly have. I've heard of rough skin, but skin flaps...where'd you read that? LOL. Whew! I have neither, thank God. There was a thread going a couple of weeks ago about Hazel eyes being a common feature. A lot of us responded Yes to that one, me included.
I was on Depakote during my last cycle. Though I didn't get bad hits, I shadowed constantly...almost wished I would just get the hits after days of shadowing. Other side effects were loss of appetite and constant nausea. I was on 500 mg, what are you on? My liver enzymes were constantly monitored on Depakote. At this point, 02 and imitrex injections are the only thing I use. You should read up on the Imitrex tip on the link to the left.
Very happy for you that you've found a good doctor. I found a great Neuro after 26 years of suffering with these.
Wishing you continued PF time...
Langa
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msharpe2k1
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I love YaBB 1G - SP1!
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Re: Hi Again!
« Reply #4 on: Jan 19th, 2005, 2:34pm » |
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Hi everyone-- Thought I was done with this 5 week cycle--..Pain free for 3 days,had a appt.set up with a neurologist today..wow,last nite ,sound asleep for 2 hrs---2am,i got blasted yet again behind the left eye--i had percocet from my reg doc,took 2 of them to no avail..cant lie down,try pacing in darkness downstairs,pain too great..left eye feels like its gonna blow itself up....started pounding head against the wall and remembered that didnt help last time----- leaned against the wall for 3 hrs,slightly rubbing left eyebrow with fingertips,pain halved after those 3 hrs-was able to lie in bed,fell asleep 4 hrs,woke up with same pain...saw neurologist,he gave he topamax - 2 pills a day-- it sez its for seizures and migraines..i have clusters,so dont know if it will work...i waited 25 years to drink at the bar with my friends and watch the phila eagles in the super bowl(gotta get by this weekend 1st) and now im stuck in the middle of some stupid ass cluster cycle???
anyway,i dont know if this stuff is gonna work,or if i should mix it with percocet at the heat of the moment--but ill do anything to shut off that blow torch behind my left eye that flares up every nite....tried o2..i think the problem with that,is,the pain is so great i concentrate too much on the throbing behind my left eye, instead of inhaleing the oxygen properly,i just cant stand the pain at that point..i tried ,it doesnt work,verapamil doesnt,imetrex doesnt either....we will see how the topamax works,hopeing for the best,go eagles ! -mike
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myfreaknhead
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Re: Hi Again!
« Reply #5 on: Jan 20th, 2005, 12:43pm » |
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on Jan 19th, 2005, 2:09pm, Langa wrote:
That always makes me laugh about the features that CH'ers supposedly have. I've heard of rough skin, but skin flaps...where'd you read that? LOL. Whew! I have neither, thank God. There was a thread going a couple of weeks ago about Hazel eyes being a common feature. A lot of us responded Yes to that one, me included.
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LOL, I don't remember where I read that one, but I swear I did! I'm a fair skinned, blue-eyed blonde.
~Teri
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myfreaknhead
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Re: Hi Again!
« Reply #6 on: Jan 20th, 2005, 12:56pm » |
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on Jan 19th, 2005, 2:09pm, Langa wrote:
I was on Depakote during my last cycle. Though I didn't get bad hits, I shadowed constantly...almost wished I would just get the hits after days of shadowing. Other side effects were loss of appetite and constant nausea. I was on 500 mg, what are you on? My liver enzymes were constantly monitored on Depakote. At this point, 02 and imitrex injections are the only thing I use.
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I hate the side effects of the depakote. My appetite has actually increased, and I've gained weight. I'm also tired all the time, and if I miss a dose, my head spins like crazy all through the next day. Hate it hate it hate it. I was on 1500 mg--weaning myself now (250 mg every week) so I'm down to 500 mg. I'm also getting liver checks. I became toxic at the 1500 mg, that was not fun.
I did check out the Imitrex Tip. Great idea, I will definitely try it.
I'm sorry you suffered so long (26 years! Wow!) Long remission vibes for you!
~Teri
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Langa
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Re: Hi Again!
« Reply #7 on: Jan 20th, 2005, 2:37pm » |
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on Jan 20th, 2005, 12:43pm, myfreaknhead wrote:
LOL, I don't remember where I read that one, but I swear I did! I'm a fair skinned, blue-eyed blonde.
~Teri |
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Teri, if the word gets out that you're a blue-eyed blonde, you'll be in trouble...you won't be able to keep up with your pm's...
Quote:| I hate the side effects of the depakote. My appetite has actually increased, and I've gained weight. I'm also tired all the time, and if I miss a dose, my head spins like crazy all through the next day. Hate it hate it hate it. I was on 1500 mg--weaning myself now (250 mg every week) so I'm down to 500 mg. I'm also getting liver checks. I became toxic at the 1500 mg, that was not fun. |
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At 1500 mg of Depakote, I think I would've dropped dead; glad you're weaning off of it...
Langa
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myfreaknhead
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Re: Hi Again!
« Reply #8 on: Jan 20th, 2005, 8:34pm » |
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on Jan 20th, 2005, 2:37pm, Langa wrote:
Teri, if the word gets out that you're a blue-eyed blonde, you'll be in trouble...you won't be able to keep up with your pm's...
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Hey I didn't say I was cute, just a blue-eyed blonde who doesn't resemble a large jungle animal...
No, I really am totally cute. 
~Teri
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Tara Ann
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Re: Hi Again!
« Reply #9 on: Jan 21st, 2005, 12:29am » |
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Welcome Teri, and glad to hear you have SOME relief. Where abouts in NH are ya? Just moved from there after spending most of my life there (from second grade until 5 months ago when I moved to WV) I used to live in the lakes region. Who's your nuerologist? The headache clinic at Dartmouth is pretty good, Dr. Ward and Vernon are the docs. They seemed pretty knowledgable and up to date on CH (esp Dr. Ward it seemed)
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http://www.myspace.com/taraann77
 
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myfreaknhead
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Re: Hi Again!
« Reply #10 on: Jan 22nd, 2005, 4:42pm » |
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on Jan 21st, 2005, 12:29am, taraann wrote:| Welcome Teri, and glad to hear you have SOME relief. Where abouts in NH are ya? Just moved from there after spending most of my life there (from second grade until 5 months ago when I moved to WV) I used to live in the lakes region. Who's your nuerologist? The headache clinic at Dartmouth is pretty good, Dr. Ward and Vernon are the docs. They seemed pretty knowledgable and up to date on CH (esp Dr. Ward it seemed) |
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Hi Taraann~
I'm in So NH, about 15 minutes from Manchester. My little boy sees a padiatric neurosurgeon at Dartmouth (what a drive from here!) but I didn't even know they had a headache clinic. Good to know! What a wonderful place that is; they have been very good to us~my son spent 2 months in the NICU there...
~Teri
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myfreaknhead
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Re: Hi Again!
« Reply #12 on: Jan 26th, 2005, 11:03am » |
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on Jan 23rd, 2005, 1:34pm, taraann wrote:
Ooh a web page even...thanks!
Yes, the staff is amazing up there. Wasn't as impressed with Peds as I was the NICU team, but then again, it's the NICU that saved his life so maybe I could be a little biased...
He and his twin sister were born over two months early, and he had a terribly hard time. Girl breezed right through it, but he went through hell. You'd never know it to look at him today, though! Now he has hydrocephalus, which so far, has prooved to be pretty much benign. Just keeping an eye on Mr. Bighead for now...LOL
Developmentally they are both doing well (Girl shleps a tiny bit behind, but no big deal), and they are pictures of good health. Thanks for asking!
~Teri
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