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Topic: HELP!!! (Read 513 times) |
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Renee
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I was supposed to have my initial appt with neuro this wednesday with dr mathews in their dallas office but they come from houston once per week and are the houston headache clinic.
I have suffered with almost continuous ha for many weeks and have been to e.r. twice for shots, but no help yet. i was up last night crying and pacing in pain and my left eye is almost closed shut.
well...dr mathews office just called and has to postpone appt until dec 18. it was all i could do just to hang on until this wednesday, now wait another 2 plus weeks?
after talking with the nurse, she told me i was in a constant cycle and needed to be admitted for DHE via IV and they could only admit me in the houston hospital. I told her i don't even feel up to driving to dallas muchless houston. she told me to catch a taxi to the airport, catch southwest airlines to houston, and catch taxi there to their office and bring a week's work of clothes for hospital stay.
i don't want nor feel like getting to houston, nor do i have anyone to go with me and am having problems getting into a ha clinic in dallas anytime prior to february.
does anyone have any majic they can work or know of a ha neuro that can see me any quicker?
this is hopeless!
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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ClusterChuck
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.Re: HELP!!!
« Reply #1 on: Dec 1st, 2003, 1:56pm » |
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DAMN, Renee! I am SO sorry for the shit you are going thru! Damn! Have you tried your local gp to see if he will at least give you a script for Oxygen? Or imitrex? Let him know how bad you have it right now, and just need something to get you thru till you can see an expert.
Wish I had a better answer! Prayers and vibes heading at you.
This sucks!
Chuck
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aprilbee
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Re: HELP!!!
« Reply #2 on: Dec 1st, 2003, 2:06pm » |
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Geez, I am so sorry, I have to *bump* clusterchucks reply...talk to your primary doctor, see if he can help,
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Madame_DeFarge
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All I can say sweetie is that I feel your pain. Dec. 18th is the soonest I can see a nuero, too. I have been hanging on by my fingernails for almost a month and still have 28 days to go. I DID get in touch with my GP who was very helpful and just asked what I needed to get to the 18th. I found that Prednisone helps the Maxalt work better, but still end up in ER for Demerol or whatever.
Trust that I feel with you as I'm in screaming pain at the moment myself and we will both just try to endure until the 18th. I will think of my fellow sufferer as I count the days and know I'm not alone.
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Miklos
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Re: HELP!!!
« Reply #4 on: Dec 1st, 2003, 2:21pm » |
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You might try Doctor Jacob Wolfman in Plano. He is a neurologist knowledgeable about cluster headaches. He is usually sensitive enough to get you in on short notice:
(972) 596-2616
Also, Dr. Terrence Henry, GP, is my doctor, and he quite knowledgeable about clusters. He diagnosed me after two visits in April 1986.
(972) 596-6917
Both doctors are located in the same building just east of Preston Road in Plano.
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Rick_K
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Re: HELP!!!
« Reply #5 on: Dec 1st, 2003, 2:25pm » |
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Renee,
I have had to wait a month to get into see Mathews but he does know his stuff and we get you the meds you need. Print out the oxygen info and take it to your doctor and if necessary beg for a script. You should have no problem getting it. Mine will give it to me with a phone call. That should help you hang on until you can get into see Mathews. If your doctor will not give you oxygen, I cannot see why not, let me know and I'll give you my doc's name, he is at Presby in Dallas.
They tried to get me to do the DHE shit in Houston but I cannot afford to go to houston for a hospital visit. I had them fax me all what they planned to do and said no thanks.
Good luck with your doc and PF vibes heading your way.
Rick
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episodic since 1969........damn
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OneEyeBlind
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Re: HELP!!!
« Reply #6 on: Dec 1st, 2003, 4:44pm » |
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Try working with you GP to get through until you can see the neuro like the other folks said. In the meantime, I'm sending good vibes your way ....... hoping for some PFDAN's for ya !
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AlanG
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Re: HELP!!!
« Reply #7 on: Dec 1st, 2003, 4:58pm » |
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Renee sorry to hear what your going thro, GET some Oxygen from your Doc, Ive been on it for about 2 months now and Ahhhhh the Relief i get when i breath it...it stops me from screaming my head off . Pain still comes but stays really low level and goes away quickly with oxygen. Call your doctor, oxygen is usually delivered right to the house and no need to go anywhere to get it.
Just dont smoke around the stuff its very explosive.
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don
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Why all the way to Houston? Iv DHE treatment? Christ any hospital can do that. I did a 48 hour DHE inpatient 2 years ago and, knock on jello, I've been cycle free ever since.
Why cant they just make a referal to a Dallas hospital?
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Renee
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Re: HELP!!!
« Reply #9 on: Dec 1st, 2003, 10:57pm » |
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they said they can't refer me to a dallas hospital because they only have authority to practice at a particular hospital in houston. they come to dallas only once per week but have no authority at any dallas hospitals....that is what they told me.
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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BlueMeanie
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Renee,
Sorry to hear the pain you are going through and the hassle. I see no reason why your GP cannot prescribe some Imitrex for immediate relief. If I where you, I would go to Dr. office in the A.M. & be the first one in line. Just see whoever will take you first. Let them know you are in CH pain and in need of Imitrex and/or O2.
Sending vibes your way. Wishing you the best luck I possibly can. PF
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Lori
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Re: HELP!!!
« Reply #11 on: Dec 1st, 2003, 11:47pm » |
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I think Don has a point. Most any hosp should be able to do that treatment..try those numbers given for the two neuros to see if they can help you locally. Hope you feel better soon. 
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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TxBasslady
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Re: HELP!!!
« Reply #12 on: Dec 2nd, 2003, 1:50am » |
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Renee,
Give that neuro of Miklos's a call. You need to get some relief!!!
You may be surprised....he might can see you real quick, considering what you have been going thru.
Let us know.........
Jean
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Roxy
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Re: HELP!!!
« Reply #13 on: Dec 2nd, 2003, 2:01am » |
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Renee,
My best friends husband is a doctor in Plano....and he recommended Hurd, he is in practice with Wolfman (who Mik goes to). So I would imagine either one of those would be just fine to see.
I know that Matthew's office in Dallas is 'packed' on the day that he travels up there. Since he's only up there once a week, it gets a little frantic in there. I would imagine that is why you got bumped. I know it's hard for me to travel the 6 hrs. to see him in Houston, and it's 3 hrs. to the Dallas office. I would call Wolfman's office and see what they can do for you. He is close, and that does come in pretty handy at times.
Like I said, the good thing about Matthews is that he will give you all the trex you want.....as long as you can work it out with your insurance company. I'm real curious as to why he never recommended the DHE drip for me. Does is not do much for chronics?
Let us know what you decide to do,
T
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BarbaraD
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Re: HELP!!!
« Reply #14 on: Dec 2nd, 2003, 4:49am » |
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I'm surprised Roxy that they haven't tried the DHE on you. That's usually their first line of defense. And it does work most of the time. I usually just get my neuro to order nurses to come to the house for the IVs then follow up with injections till the cycle is broken. That's the only way I've gotten through a few cycles. I'm usually pain free during the time I'm using DHE and it will break a bad cycle.
Renee = call Mik's neuro and tell them it's an emergency.
Or get hold of your primary and let him/her know you've got to have something now.
Hugs BD
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Patrick_A
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Re: HELP!!!
« Reply #15 on: Dec 2nd, 2003, 10:55am » |
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Does Imitrex help you at all?
PM me if it does!
Patrick
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Roxy
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Re: HELP!!!
« Reply #16 on: Dec 2nd, 2003, 11:26am » |
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Barbara,
I called my neuro this morning and asked him why he hadn't tried the DHE on me. He said that since I'm chronic, the drip would only take me PF for a few days, and then I would be right back where I started. He will only do the drip on episodics.....with chronics, he said, his goal is to find a preventative that will last for some time. He said it is just as lot of meds, side effects and money for a couple of PF days, and it's not going to kick me out of being chronic.
I still haven't had to the nerve to tell him about my at home treatment............. 
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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Renee
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Re: HELP!!!
« Reply #17 on: Dec 2nd, 2003, 5:37pm » |
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friends,
i got in with a g.p. that is a friend of my mom's. he changed my celebrex to vioxx that helped with the neck and gave me stadol (spelling?) and phenergan to last until dec. 18.
after i got home i got a call from dr. stuart black's ha clinic at presby in dallas and they first said they couldn't see me until march. so...i used all the persuasiveness and guts that y'all told me would be necessary and even asked if i were to go to the e.r. at presby would it be a neuro from dr. black's office that would be called in? she answered yes. i then told her i have a csf patch and the g.p. is afraid the inflammation from the ha could cause the patch to leak causing need of a craniotomy. she put me on hold and then came back and i see them ONE WEEK FROM TODAY!!! HOORAY!
thanks for all the backgone y'all gave me to not accept no and for all the encouragement.
now...does anyone have any stories to tell about dallas neurology assoc. (aka Dr. Stuart Black)? This was my original referral but they couldn't fit me in so that is why I even called Houston h/a clinic to begin with.
At least now I will have a local (45 min. away) neuro with a local hospital. Bad thing is I now have an indention in my forehead. The g.p. thinks it might be bone deterioration from the CSF patch inflammation combined with CH that is causing such trauma to the skull. i'm not gonna worry about it until they take a picture of my noggin' and tell me why I have this indention.
anyway...the vioxx helped my neck and i've got the stadol for last resorts until next week.
i will keep y'all posted and please let me know if you know anything about dr. black.
wishing all pf days and pf nights my friends,
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Renee
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May we all find some pf time! Is it summer yet?
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Re: HELP!!!
« Reply #18 on: Dec 2nd, 2003, 9:42pm » |
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barbara, roxy, txbasslady, miklos, rick, alan, don, blue meanie and all the rest!
i was as low as low could get and really didn't want to go thru this suffering any further or any longer...now, thanks to all of you and the rest of the CH family....thank you from the bottom of my heart!
i am not alone in this and i am stronger now than before because of you!
i will learn to make the best out of what life has for me!
thank you all again,
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Little Deb
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Re: HELP!!!
« Reply #19 on: Dec 2nd, 2003, 10:15pm » |
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Renee, just checking also if imitrex works for you. you could have some by fri.???? let me know.
also, i took stadol via nasal one time and it made me throw up for 4 hours and didn't touch the CH. fyi.
deb
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BlueMeanie
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Glad to hear you're doing better. I hope the Stadol works for you. I sure didn't like it, but it was better than nothing.
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Charlie
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Re: HELP!!!
« Reply #21 on: Dec 3rd, 2003, 12:01am » |
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Damn. Nothing's ever easy. Good bad and ugly.
Better but it's still a horror story.
The thing is "headache." They never take it seriously
Best of luck and let us know how things work out.
Wish I had the magic bullet.
Charlie
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TxBasslady
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Re: HELP!!!
« Reply #22 on: Dec 3rd, 2003, 12:11am » |
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Renee,
So glad to hear that you are making some progress towards seeing a neuro.
Hope the meds you got today, holds you over till next week.
In the meanwhile....sending you lots of pf vibes......
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
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I adopted a Vietnam POW/MIA from El Paso, Texas!
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Renee
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May we all find some pf time! Is it summer yet?
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Re: HELP!!!
« Reply #23 on: Dec 3rd, 2003, 7:54pm » |
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the doc gave me phenergan suppositories to use with the stadol. thus far have not had to use them...yippee!
hoping for pf days for us all
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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jonny
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Let me give you a trick to the supp's (im not being an ass here) run it quick under water.....I used Indomethacin supps for years and it makes it easyier.
................................jonny
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