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Topic: update! new at bottom (friday) of thread (Read 405 times) |
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Tara Ann
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update! new at bottom (friday) of thread
« on: Apr 25th, 2007, 6:19am » |
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Sam and I sat down and did the math yesterday. I had my first CH episode (prior dx) about 9 yrs ago. I remained episodic for a few years. Then about 4 years ago I "morphed" into chronic clusterhood.
The reason I am bringing up this timeline you are wondering? In all these years, all the meds, all the docs, all the different treatments, diff hospital stays, etc, etc. I have never walked out of a doctors office feeling positive. I have always felt like I wasted my time and hopes at every doctors office, hospital, ER, pharmacy, etc. That is until now.
No I am not painfree. No I don't have a wonderful new fangled game plan. But I do have a great neurologist and GP that made me feel like I mattered. Like they will do everything in their power to get me through this flareup.
In all these chronic years I go from my normal chronicness to a few weeks (to sometimes a few months) of completely out of control clusters.
I am staying on the Topamax, not much of a choice but to give it a try, I truly have tried almost all other options. I begin tapering up from 25 mg's a day today. I have a little over 2 weeks left on my prednisone taper left. After that the neuro wants to try to keep me off steroids for good. Looking back at all my years he is afraid of the extent of damage I probably have been doing to my body with all the steroids I have dumped into it all these years. My teeth are a prime example. I had perfect teeth (except for stains that I was born with) but in these past couple years all but my fronts have started breaking from the gums down. I can be eating a piece of bread and break a tooth!
I am still on my friend the phenergan as needed and dilaudid pills as needed. Before anyone gongs the narc warning tolls I know the pros and cons of narcs. All through the years I will sometimes go on a painkiller for a few weeks just to take the edge off during the day so I can actually function somewhat. Dilaudid in no way shape or form can kill a cluster but if I take 8-10 mg early enough I can sometimes keep a CH from climbing above a 5-6 on the kip scale. I weighed the options and I'll chance the rebounds and the possibility of having to be weaned off the pain med in 2 -3 weeks in exchange for some mild pain relief, mild as it may be. All of this was discussed with my neurologist yesterday. The state of my clusters are so out of control that I am getting literally minutes in between each attack. I have yet to get a cluster below a 5-6kip in days and days now. So that leads me to the next game plan.
If I am still in this state and can't take it anymore I am to call the neurologist anytime of day or night. He will in turn call the hospital, tell them exactly what to give me, get my pain to below that damn 5 mark (we set realistic goals, and a 0 is unrealistic for me right now) and send me home. Then I should hopefully be able to keep it 5 or below from home. The tricky part is just to get it to that point.
I have never had a doctor tell me he will deal with the ER doctors directly for me. When I have ended up in the ER the docs their either blow off that my doc sent me and do what the hell they want, they treat me like a drug seeker, or they admit me cause they have zero clue of how to help me and want to "pass the buck" (as sam calls it) to another doc.
This also puts my mind at rest because you all know how clearly we can think when we are in so much pain and at an ER. I'm sure we all look like loons to everyone. Well I have a past physchiatric history (5+ yrs old) from when my mother passed away. I had a rough bought for about 6 months right after Antoinette was born and too much was going on in my life (my mom's death was just the tip of the ice berg of horrors that happened all at once) So when I do end up in the ER and/or admitted I sometimes end up with a doc that wants to treat me like a physchiatric patient instead of treating my headaches. That is upsetting and frustrating to say the least.
Well this update turned into quite the novel. If you made it this far I am impressed, your concentration skills are above where mine are! Thanks so much again my cluster family. Your strength, sense of humor, intelligence, advice, and concern has always been such a source of comfort to me.
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| « Last Edit: Apr 27th, 2007, 9:23am by Tara Ann » |
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purpleydog
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Re: update! this took me a long time to write
« Reply #1 on: Apr 25th, 2007, 7:44am » |
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You GO TA!!
You must feel great, now that you have a GP and a neuro who are willing to work with you, and your neuro is really willing to go out of his way to help! Just having that feeling of hope goes a long way in helping you to deal with our condition!
Hopefully, you will be able to stay off the steriods, in my opinion, they are worse than being on narcotics, and when you look at the amount of time you are on either, you are doing a lot more damage, long term, with the steriods. Narcs don't work for everyone, but if they help bring the CH down a few notches on the K scale, then they are worth the chance you may have to be weaned off them, by your doc. He obviously knows how to handle your situation, and won't leave you hanging. It's good you are working together. 
Congratulations!!
I would only suggest that, when you need to go to the ER, and the ER docs refuse to treat you as your neuro says, even after they talk to him... have Sam call the neuro RIGHT BACK, and tell him what's going on. Another call from him should straighten the ER docs right out.
Good Luck! You know how to reach me if you want. I'm here for ya. 
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Jackie
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Re: update! this took me a long time to write
« Reply #2 on: Apr 25th, 2007, 8:24am » |
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Good for you, Tara...
Having a good doctor is half the battle.
As to the Topomax......
I know many have used it and HATED the drug. Blake did really well on it for a long time (over 2 years) and if I remember correctly it's been good for BarbaraD too. Good luck with it.
Love to you,
Jackie
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Langa
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Re: update! this took me a long time to write
« Reply #3 on: Apr 25th, 2007, 8:56am » |
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Quote:Good for you, Tara...
Having a good doctor is half the battle. |
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Ditto on that!
Hugs to you TA.
Langa
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Rosybabe
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Re: update! this took me a long time to write
« Reply #4 on: Apr 25th, 2007, 3:02pm » |
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Hang in there TA!! I hope you get to feel beter soon and I am glad you found a DR that is willing to go the extra mile for you. Good Luck and wish you the best!!
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Charlie
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Re: update! this took me a long time to write
« Reply #5 on: Apr 25th, 2007, 7:01pm » |
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Nice going TA 
Charlie
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E-Double
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Re: update! this took me a long time to write
« Reply #6 on: Apr 25th, 2007, 8:01pm » |
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Fantastic!!!!
there is nothing like that feeling.
It is almost like finding a "home"
I felt the same way the first time I went to NECH.
Unreal.
Good luck and know that we are all here for ya!
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JeffB
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Re: update! this took me a long time to write
« Reply #7 on: Apr 25th, 2007, 8:26pm » |
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You're in my thoughts everyday, honeydollsugarbabysweetums!
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Gator
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Re: update! this took me a long time to write
« Reply #8 on: Apr 25th, 2007, 9:59pm » |
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Congrats, TA! I can totally relate to that feeling. I felt that way after my first appointment with my 3rd and current neuro. It feels great to know your doctor acutally gets it and gives a shit to boot.
Hope things just keep getting better for you!!!
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nani
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Re: update! this took me a long time to write
« Reply #9 on: Apr 25th, 2007, 11:00pm » |
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Sounds promising, Tara. I'm really glad that there's a light at the end of that tunnel for you. It's a great feeling when the dr's got your back.  hugs, nani
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ClusterChuck
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Re: update! this took me a long time to write
« Reply #10 on: Apr 26th, 2007, 7:29am » |
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SO glad to hear this, Tara, m'luv!
Maybe now, they can make some progress in dealing with the beast.
Chuck
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Tara Ann
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Re: update! this took me a long time to write
« Reply #11 on: Apr 26th, 2007, 12:48pm » |
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I sure am feelin' the love 
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Yorky
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Re: update! this took me a long time to write
« Reply #12 on: Apr 26th, 2007, 2:47pm » |
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hospitals suck..clueless, totally agree
(i think we do look like "loons " when at ,ER )
 to your neuro...
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Tara Ann
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Re: update! this took me a long time to write
« Reply #13 on: Apr 27th, 2007, 9:21am » |
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I gave in and followed the doctors orders and went BACK to the ER (aka BS) The neuro had said the plan was to get me below a 5 on my pain scale then send me home and maintain that level with meds at home. Guess what? I arrived at the ER at a 8-9. At one point dropped down to a 6.5. Then a few minutes of shadows, then back up to a 8. then blah blah blah all around the upper end of the kip scale with just those few moments of breaks. Same crap as at home. After 5 hours at the ER I went home in the same state as when I left.
This time it is so out of control its unfreakinbelievable! Maybe my CH grew into an alien in my head 
I am to call my neuro this a.m. , actually getting ready to do so shortly.
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aprilbee
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Re: update! new at bottom (friday) of thread
« Reply #14 on: Apr 27th, 2007, 9:46am » |
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Oh TA....what a kick in the teeth....I hope you get to feeling better soon, you deserve a break! Sending you vibes and prayers....
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Maffumatt
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Re: update! new at bottom (friday) of thread
« Reply #15 on: Apr 27th, 2007, 9:48am » |
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Thinking good thoughts and sending you well wishes TA. Hope you get it under control soon.
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Gator
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Re: update! new at bottom (friday) of thread
« Reply #16 on: Apr 27th, 2007, 1:02pm » |
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Sorry to hear you had such a rough night. I do hope you get a break soon.
So did your doctor follow through with what he said he was going to do? Was he in communication with the ER docs or was he not called?
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Tara Ann
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Re: update! new at bottom (friday) of thread
« Reply #17 on: Apr 27th, 2007, 1:27pm » |
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Well we have left 3 messages at the neurologist's office now and have yet to speak to anyone yet. On tuesday I felt like I had a doc that cared, I felt hope and promise. Now I just feel like someone just popped that balloon. The ER doc told me the neuro wanted to speak with me this am! Was that a load of crap? Just to get me out of his hair or is the neuro just very busy today?
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Rosybabe
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Re: update! new at bottom (friday) of thread
« Reply #18 on: Apr 27th, 2007, 1:56pm » |
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Oh, Tara, maybe because is Friday, a lot of people schedule the apps for friday so they only miss one day at work and usually it is not too busy that day for anybody else but for Drs is the opposite..
Hang in there Girl! he will call you soon!!
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Charlie
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Re: update! new at bottom (friday) of thread
« Reply #19 on: Apr 27th, 2007, 8:21pm » |
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Rats.
Sorry to hear this. Give the doc one more shot and if he won't play ball; give him another "shot."
Hang on kid
Charlie
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andrewjb
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Re: update! new at bottom (friday) of thread
« Reply #20 on: Apr 28th, 2007, 11:22am » |
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, hopefully this is a hic,up. sincerly hope youve some pf time today. andrew.
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