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        Supporter's Corner >> Supporter's Corner >> Nuero.....grrrrrrrr
        
(Message started by: kayarr on Oct 4^th, 2005, 12:29am)

Title: Nuero.....grrrrrrrr
Post by kayarr on Oct 4^th, 2005, 12:29am

I know that everyone with that much education should be paid for their knowledge but come on.......She wants him to try topamax. We were kinda up for new things til we started reading the rest of the story.

How do you find a Dr who is interested in the least about clusters? She read the facts on the laptop and answered her phone in the middle of our appt. (it was her mom asking where the screw driver was) I kinda felt dismissed.

I feel like calling my insurance company and telling them if they want to pay for substandard care they can go ahead.

I am tired of non-feeling , non- caring health care professionals. I am very effective when angry. Just a couple more indiscretions and BAM.

Thank you for letting me type this out:)

Title: Re: Nuero.....grrrrrrrr
Post by ClstrHeadSupport on Oct 24^th, 2005, 10:28am

I'm only surprised they're aren't more replies here!

Boy do I feel your pain. You know I would rather have an incredibly stupid doctor that cares, at this point, then having one who's incredibly smart who doesn't. Like I said in another post, what it comes down to, good doctor or not is that this is someone who, chances are, doesn't love a sufferer. They haven't had to stand there and watch someone they love, suffer and incredible amount of pain and know that there was nothing they could do about it. I don't know about your sufferer but mine has never gotten a cluster attack while in his Neuro's office. So all he can do is describe the pain. You know what doctors/people/bosses hear when you say I have Cluster Headaches?? They hear "blah blah blah headache blah blah blah". So frusterating. I feel like doctors never understand, and never strive to either. My husband has been going to his Neuro for a long time. So tell me why it was me who had to tell him what medications he should perscribe my husband?? He could not have done five minutes of research on the subject, or he would have found this site. And if he would have found this site I wouldn't have had to tell him anything. He would have known. Which brings me to the question how come this doctor who makes I'm sure, more money then I could ever hope for, has to be told what medicaitons to perscribe - who is being told by a 22 year old woman with only a high school diploma?? I would like to think that if I got paid as much, that if I was a doctor who took a vow to help others, that I would take five, ten or even just an hour of time to research the subject.

I think this frusteration is felt by us all. Thanks for letting me vent along with you!

Title: Re: Nuero.....grrrrrrrr
Post by DennyM on Oct 25^th, 2005, 2:23am

Finding something good to read about a Neuro on this site is about as rare as CH itself! What is the problem with Neuros? Are they just too arrogant to admit their ignorance of CH (and too lazy to do anything about it!), or are they too busy thinking about their inflated bank accounts to care one way or another how much their clients are depending on them for constructive help?

Either way - with all the information available to them on this site, there's no excuse.

Some years ago, a Neuro (the only one in Cairns) had Brian on about half a dozen different medications - including prednisone and one of the ergotamines. None of it was working, so this turkey prescribed yet another ergotamine and neglected to tell Brian (who was almost at the end of his tether with the pain and hardly knew one day from the next) to stop taking the first one. We came very close to finding out the hard way how fatal an overdose of these things can be. Thanks to a horrified Pharmacist, Brian stopped the ergotamines altogether before the damage already done (loss of feeling/function in ankles, then knees) could go any further.

You can bet, since then, I've made it my business to find out everything I can about prescribed meds - safe dosage, expected side-effects, which can be safely taken with what etc. etc.

This Neuro was treating two other people I knew at about the same time (not for CH), and he managed to stuff their medications around too. Makes you wonder how he ever got through med school - let alone went on to specialise. Perhaps the chances of finding an understanding & sympathetic GP are better?

PF days to all (in spite of bad Neuros!!!)!

Denny

Title: Re: Nuero.....grrrrrrrr
Post by Margi on Oct 25^th, 2005, 9:43am

So did your husband try the topomax? It is a generally prescribed treatment for cluster and, for some, it has had good results once they get past the side effects.

I'm not sure why you're so angry about him being prescribed this...?

While I agree that it was rude that she took a call in the middle of the appointment, at least she is willing to give him a cluster-recognized treatment.

on 10/24/05 at 10:28:43, ClstrHeadSupport wrote:

I'm only surprised they're aren't more replies here!

Um, sorry?

Title: Re: Nuero.....grrrrrrrr
Post by thomas on Oct 25^th, 2005, 3:16pm

on 10/25/05 at 09:43:07, Margi wrote:

So did your husband try the topomax? It is a generally prescribed treatment for cluster and, for some, it has had good results once they get past the side effects.

Life altering/saving results, if you don't mind me expaninding on your post, Margi. ;;D I know for a fact Topomax has really been a blessing for a few cluster heads here. I would try it if I were your husband.

Title: Re: Nuero.....grrrrrrrr
Post by Margi on Oct 25^th, 2005, 3:30pm

on 10/25/05 at 15:16:42, thomas wrote:

if you don't mind me expaninding on your post.

You can expanind on my posts anytime, Thomas. LOL ;)

Title: Re: Nuero.....grrrrrrrr
Post by seasonalboomer on Oct 25^th, 2005, 3:46pm

on 10/24/05 at 10:28:43, ClstrHeadSupport wrote:

You know I would rather have an incredibly stupid doctor that cares, at this point, then having one who's incredibly smart who doesn't.

I'm not so sure I agree with you on this one. How far down the IQ chart are you willing to go on that assertion? [smiley=laugh.gif]

Scott

Title: Re: Nuero.....grrrrrrrr
Post by thomas on Oct 25^th, 2005, 4:53pm

on 10/25/05 at 15:30:32, Margi wrote:

You can expanind on my posts anytime, Thomas. LOL ;)

Just goes to show, even those of us who think we are perfect have the ability to prove ourselves wrong from time to time. [smiley=laugh.gif]

Title: Re: Nuero.....grrrrrrrr
Post by kayarr on Oct 30^th, 2005, 2:19am

The reason we have been a little skeptical about topamax is 1. the nicknames of dopey max or dopamax don't make it really appealing and he is on heart medication that is already hard on his liver and we are concerned about a double whammy.

He had his 50 year check up and talked to his Dr. about it and I think he has decided to try the topamax. Who knows, something may work:)

Title: Re: Nuero.....grrrrrrrr
Post by E-Double on Oct 30^th, 2005, 3:49pm

You guys will know rather quickly if it will help and if he can tolerate any side effects.

Good luck and PF wishes!

E

Title: Re: Nuero.....grrrrrrrr
Post by kayarr on Oct 30^th, 2005, 8:06pm

Thank you for the wishes and some form of time line....sorta...lol.

What type of good effects are we talking about? He is a Chronic with no time off. Good days are one a day and only a couple at night. Bad days are 12 a day and all night too. Could it cut back the number of headaches? Could it make him seasonal? Could it stop the dern things altogether?

Thanks for any input.

BTW You guys and your opinions helped him to decide to try the stuff. Thank you!

Title: Re: Nuero.....grrrrrrrr/Margi
Post by kayarr on Oct 30^th, 2005, 8:23pm

on 10/25/05 at 09:43:07, Margi wrote:

We are going to try it at the blessing of his heart Dr. and his GP. I have learned to check closely about drug interactions since right after his heart attack I had just been saying to him that his verapamil and beta blockers may be causing some problems and he asked me to call an ambulance. (it was those two drugs not playing well)

She was a very bright, young Dr. who did everything from her lap top. No eye to eye, nothing. I felt like if she had all that information in front of her she could have finished the side effects part.

As for that call. The phone was in her pocket and she "took" the call in the room. I have never had a job as important as a physician but my kids knew unless there was blood they don't call Mom at work.

I guess we just don't trust her.

Title: Re: Nuero.....grrrrrrrr
Post by E-Double on Oct 30^th, 2005, 8:54pm

Has he tried using melatonin before bed?

If he has the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 8-10 times.....I have slept through the night since August (04, Chronic dude yet nights are fairly easy).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: Nuero.....grrrrrrrr
Post by kayarr on Oct 30^th, 2005, 9:11pm

I guess he tried Melatonin before I was in the picture. Fortunately O2 works as an abortive for him. He only takes 500 milligrams fo Depokote a day. Since he had to give up the Verapamil he said it must have been doing something since it has been the worst year in about 6 years.

I am so happy you are sleeping. It is a lot harder to keep it under control when you are exhausted.

Thank you for all the information too. It really means a bunch to me to be able to ask questions from people who know what they are talking about.

Title: Re: Nuero.....grrrrrrrr
Post by ClstrHeadSupport on Nov 1^st, 2005, 10:14am

on 10/25/05 at 09:43:07, Margi wrote:

When I saw her post, I was the first to reply. I was saying I was surprised there weren't more peple replying to her post, saying they felt the same. That's all! :)

Title: Re: Nuero.....grrrrrrrr
Post by ClstrHeadSupport on Nov 1^st, 2005, 10:21am

on 10/25/05 at 15:46:56, seasonalboomer wrote:

I'm not so sure I agree with you on this one. How far down the IQ chart are you willing to go on that assertion? [smiley=laugh.gif]

Scott

LOL I'm just sick of all the doctors that don't care. They have the ability to help and CHOSE not to. That is SO frustrating. And it's not just the Neuro's. It's the PCP's, even the pharmacists! Maybe that's just people these days but I'm so fed up. The other day I went to pick up my husbands prescription for imitrex (that we're having to pay $160 for, out of pocket since his insurance co. decided they were only going to give him four shots a month), I was in a rush because my husband was in the middle of a cluster, so I was rushing and for the first time in as far back as I can remember, the pharmacist actually seemed to care. She talked to me. Not like a patient. Not like another customer in a long line, but like a person. It's been so long since I felt like someone cared about the pain my husband suffers and the pain it causes me to see him in it. I almost started to cry. So yeah, I'd have to stick to my original statement. I'd rather have an idiot who cared enough to do the research then to have a genius who was to busy counting the money he's making off of us to try.