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Topic: Second Opinion? (Read 236 times) |
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luveemom
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Second Opinion?
« on: Aug 2nd, 2007, 7:07pm » |
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Just want to know what you think of me getting another opinion? I just went to a new neuro guy the other day, and being in a vicious cycle right now he gave me ultram & o2 for an abortive. I am on the o2 as much as I can, but still no relief. He told me I can call if I have any problems, so I did today. He sounded irritated that I haven't ramped my Topamax up to 50mg yet, but he told me to wait 4 days...ugh...I am getting the feeling he doesn't treat to many clusters....So he said go to 50mg tonight! I said ok..I just think maybe I should look elsewhere...I have had very little luck with the neuro's in my area. I am bummed and not sure what to do....something has got to break this I cannot function like this much longer it's been 4 weeks now and he said it will be a good 3 to 4 weeks to get Topamax to the therapeutic dose.....I was on 200mg a day before pregnancy. Help...Advice??
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Ray
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Re: Second Opinion?
« Reply #1 on: Aug 2nd, 2007, 7:25pm » |
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If you don't like the neurologist, fire him/her. Try to find a headache specialist. The OUCH website is a good research tool for finding a doctor.
Good luck,
Ray
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You have my prayers and compassion-I'm right there with you.
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Jonny
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Re: Second Opinion?
« Reply #2 on: Aug 2nd, 2007, 7:41pm » |
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on Aug 2nd, 2007, 7:07pm, WOMANINPAIN wrote:| I am on the o2 as much as I can, but still no relief. |
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Im not sure how to read that.
You should get on 02 as soon as you feel the beast coming, its not about being on it "as much as you can"....its about getting to it as soon as you feel it coming.
If I read your post wrong im sorry, what do I know.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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chewy
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Highlighted Docs are probably in the top 10 in the USA.
Connecticut
Alan Rapoport
Stamford
Stewart Tepper
Stamford
Alexander Komm
Vernon
Tanya Bilchik
Glastonbury
Fred Sheftell
Stamford
Dr. James B. Butler (Neuro)
Shelton
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Charlie
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Re: Second Opinion?
« Reply #4 on: Aug 2nd, 2007, 7:48pm » |
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50mg isn't unusual for Topomax. I had more after a time but I didn't like that it made me a little nervous. It may not do this to you.
Any good neurologist should talk to you about CH a bit. I go to mine for epilepsy but he likes to hear the latest from me on CH. Still, if you don't like the guy, look for another.
Meanwhile, give this another try:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Rosybabe
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Re: Second Opinion?
« Reply #5 on: Aug 2nd, 2007, 7:50pm » |
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Here is the link for a list of recommended Doctors..
http://www.ouch-us.org/chgeneral/doctors.htm
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luveemom
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Re: Second Opinion?
« Reply #6 on: Aug 2nd, 2007, 8:00pm » |
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Jonny, what I meant was I am taking care of my 5 month old baby full time so "as much as I can" just meant that I cannot always get on it when I should...and when I am able to get on baby is tugging at it ect....so it is not easy to say the least to hop to it and get it on quickly like I need it. Chewy thanks for the list and I will also look on the ouch site too....the guy in Stamford stands out as they were highly recommended, but they also do not take my insurance. Charlie, your post is very interesting, and a bit confusing. I will give it a go. I know that for me, cold is good. I was being very successfully treated prior to my pregnancy by a pain management guy, since I had the baby though he only see's spine pt's. I have not had good luck with Neuro's, I have been to many in my area in the past 10 years. Most don't have any cluster pt's...thank you all...your words of wisdom are very helpful...
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tanner
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Re: Second Opinion?
« Reply #7 on: Aug 2nd, 2007, 8:08pm » |
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I agree that if you don't like your neuro lose him, but my very best of all times was a Doc in Annapolis that took the time to learn from this site and everything I printed from here and OUCH.
I had already been to a some of the Doc's on the list including 2 that are highly recommended. They just didn't work out for me.
Different strokes and all that 
BTW......Nice to meetcha.........Tim
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luveemom
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Re: Second Opinion?
« Reply #8 on: Aug 2nd, 2007, 8:20pm » |
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Hi Tim,
Nice to meet you too, and thanks. I guess it is worth a shot to try another neuro, it just exhausts me frankly. I get a little frustrated that it is hard to find a good Doc who is knowledgeable in this....I just want to feel better
alicia
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Jonny
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Re: Second Opinion?
« Reply #9 on: Aug 2nd, 2007, 8:33pm » |
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on Aug 2nd, 2007, 12:43pm, WOMANINPAIN wrote:| 4 teenage boys ages 17,16,15,14 |
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Alicia, are you telling me that with all these kids in the house you cant pass the kid off to get rid of a CH in time?
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| « Last Edit: Aug 2nd, 2007, 8:34pm by Jonny » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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stevegeebe
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Re: Second Opinion?
« Reply #10 on: Aug 2nd, 2007, 8:49pm » |
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Jonny is right.
O2 as soon as you feel the slightest twinge. Otherwise it's a waste.
Steve G
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luveemom
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Re: Second Opinion?
« Reply #11 on: Aug 2nd, 2007, 8:49pm » |
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None of the teenagers have been here for the past two weeks. My husbands two boys live here every other weekend and they don't take the baby. My older boys have been on vacation with their dad. Don't get me wrong, my husband is a wonderful help, but he also works 3 jobs. This was not a babysitting question, this was a second opinion question because I need an abortive med.
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E-Double
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Re: Second Opinion?
« Reply #12 on: Aug 2nd, 2007, 8:57pm » |
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I see that you are from CT.
Get your tooshie to NECH in Stamford!!!!!!!!!
Some the best who certainly know clusters!!!!
Best,
Eric
ETA: when my daughter was a newborn and I would have her in the middle of the night sometimes I would get hit. The sound of the oxygen actually soothed her....white noise
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| « Last Edit: Aug 2nd, 2007, 9:03pm by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Jonny
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Re: Second Opinion?
« Reply #13 on: Aug 2nd, 2007, 8:57pm » |
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on Aug 2nd, 2007, 8:49pm, WOMANINPAIN wrote:| None of the teenagers have been here for the past two weeks. |
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Man, are you lucky on that 
Its not about babysitting, its about someone holding your baby for ten minutes while you get better.....nothing more, nothing less!
May we all pray that four teens in that age range be gone all at once
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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luveemom
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Re: Second Opinion?
« Reply #14 on: Aug 2nd, 2007, 9:02pm » |
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LOL...I know Jonny I know...I AM lucky!! Anyway....I manage. I will get it done one way or another.
Eric,
Thanks, I was wondering about them, my last Doc highly recommended them but they won't take my insurance. If you think they are that good I will go and pay out of my pocket.
alicia
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Rosybabe
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Re: Second Opinion?
« Reply #15 on: Aug 2nd, 2007, 9:07pm » |
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I know how you feel Alicia I had to breastfeed my daughter while having a hit...
we were alone at home and it was time for her to eat..
babies don't know about your pain they get hungry and they want to eat if not they scream and trust me, you don't want to hear a screaming baby in top of CH!!
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E-Double
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Re: Second Opinion?
« Reply #16 on: Aug 2nd, 2007, 9:12pm » |
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on Aug 2nd, 2007, 9:02pm, WOMANINPAIN wrote:
Eric,
Thanks, I was wondering about them, my last Doc highly recommended them but they won't take my insurance. If you think they are that good I will go and pay out of my pocket.
alicia |
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There are several of us who are patients there.
Rori (Lionsound) travels from Maine and I drive from Long Island to see the mensch
I know that they are now taking several other insurances that they previously did not.
I would do it if I were you. In addition, because your body is going through the changes of having just had a baby they will work closely with your OB-gyn.
Hugs and talk to Rori as she went through this not too long ago
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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luveemom
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Re: Second Opinion?
« Reply #17 on: Aug 2nd, 2007, 9:15pm » |
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Rosy,
Oh it is so hard. Of course I cannot let him cry, and I do try to get the mask on asap, but sometimes it just doesn't work out. I am just surprised too that this new neuro didn't seem to think an abortive along with my topamax and o2 would be beneficial right now......that's why I question if he is any good.......I just talked to hubby and told him what eric said and he says we will go to stamford and he wil pay out of pocket.....he is the best and I couldn't do this without him!
thanks for understanding 
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Lenny
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Re: Second Opinion?
« Reply #18 on: Aug 2nd, 2007, 9:43pm » |
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[quote author=WOMANINPAIN
Thanks, I was wondering about them, my last Doc highly recommended them but they won't take my insurance. If you think they are that good I will go and pay out of my pocket.
alicia [/quote]
Womaninpain,
If you can afford it do it....My exp.,i went from doc to doc (all neuo.)of course they all took my insur... Now for appr.5 years or so i knew of my current doc (well known and very knowlegable) but chose to stick with all these fu..ed up docs with egos from here to the moon (not much help from them either)...1) i was too cheap...2)i honestly did not think anyone can help me anymore than my previous docs (which was no help at all) finally i said the hell with it and saw the man who has been treating me ever since (i dont know why i waited so long)like i said above if you can do it go for it...you got nothing to lose(except a few bucks  ) and just think of what you can gain...and hopefully you will.....wishing you many PFDAN to come...Lenny
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nani
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Re: Second Opinion?
« Reply #19 on: Aug 2nd, 2007, 9:43pm » |
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Hi Alicia, welcome. You haven't mentioned whether you are nursing or not. If you are, please be sure to check with the pharmacist and pediatrician about any meds (especially Topamax) you are taking. If you can, see Dr Sheftell... I've heard nothing but wonderful things about him.
pf wishes, nani
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luveemom
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Re: Second Opinion?
« Reply #20 on: Aug 3rd, 2007, 12:40pm » |
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Hey Lenny,
You are so right! Part of it is that I am just fed up, and like you said I don't want to be bothered with yet another f*&#@ up doc AND pay out of pocket too....just cause other stupid doc's recommend doesn't mean sh*t to me.....now that eric and nani....(real people) have said they are good....I will gladly go and fork over the dough. Every damn neuro I have been to has been "highly recommended" by some other doc and they all suck....sorry...but I am damn cranky today...my head is bangin' and I am so irritated at my doc...I appreciate your help and nani you too......BTW.....I had to stop nursing when I started back on my topamax..so that was a bummer 
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