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        New Message Board Archives >> 2006 General Board Posts >> I am going to scream!
        
(Message started by: She-ra_mommy on May 10^th, 2006, 5:02pm)

Title: I am going to scream!
Post by She-ra_mommy on May 10^th, 2006, 5:02pm

I just got off the phone with my nurologist. She is putting me on steriods. My head is going to explode and she is acting like it is no big deal.
I can't take anymore! My house is falling apart I have not been able to go grocery shopping in two months. She keeps telling me no caffine and rest. I am trying to find a second opion I have to go thru my general dr. I'm thinking I should just go to E.r.
let them deal with it.

3 days of 10 out of 1 to 10. thats not right.

Title: Re: I am going to scream!
Post by thomas on May 10^th, 2006, 5:18pm

You actually should take in more cafine and rest only when necessary. True words here, I'm not kidding.

Title: Re: I am going to scream!
Post by aprilbee on May 10^th, 2006, 5:25pm

on 05/10/06 at 17:18:51, thomas wrote:

You actually should take in more cafine and rest only when necessary. True words here, I'm not kidding.

Yep...black coffee is a staple amongst a lot of us...and we sleep when we can...some...avoid sleep (me)... :-/
I hope can get a neuro who can help you soon...just hang in there and print off the med info and everything you can from this site and take it to your doc...its a time and mind saver.... ;)

Title: http://www.brightok.net/~Re: I am going to scream!
Post by Richr8 on May 10^th, 2006, 5:25pm

Many of us respond well to steroid (prednisone) tapers. However, you also need to be on a preventative like Verpamil, and an abortive like Imitrex or Oxygen at a minimum.

If your Neuro did not discuss these, you do need to get a second opinion. Be sure if you have another opportunity that you go in armed with info from here:

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: I am going to scream!
Post by tanner on May 10^th, 2006, 5:29pm

Run, Don't Walk to another doctor!!! I don't know what your insurance situation is but if it is like most of ours it sucks, But you need a second opinion!!! I have gone through the ER and by saying the right things gotten an MRI right there. The bad part is they will no doubt have to admit you as it is very hard to get through an MRI while getting slammed. I have done it so it can be done it is just not easy....... but neither is what you are going through right now.

.......hugs and best of luck.......tim

Title: Re: I am going to scream!
Post by Charlie on May 10^th, 2006, 5:32pm

My headaches have been gone for 15 years now. The only thing that changed about the time they started to go away was my huge increase in my caffeine intake.

Good to the last drop. http://www.netsync.net/users/charlies/gifs/coffee glom.gif

Charlie

Title: Re: I am going to scream!
Post by Paul98 on May 10^th, 2006, 10:31pm

She-ra_mommy,

If your Neuro thinks an attack of Ch is no big deal, ditch her! If she thinks coffee is bad for CH or migraine, ditch her.

If you can't get good help from your Dr. or neuro the ER might be a choice until you can find another Dr. ER's are time consuming but doing nothing is worse.

-P.

Title: Re: I am going to scream!
Post by cootie on May 10^th, 2006, 10:41pm

I don't think your neuro 'gets it'.........esp if she said that!!!!!! We just use an internalist doctor and recently he 'quit' for a less stressful hospital job (thanks to malpractice ins and sue happy people to worry about these days) so we are goin to his old partner that says he will follow Brad's program of meds and needs. You need a doc with sum knowledge to get you help pronto cuz you gotta get some relief !!! Good luck........happy daze are gone again Pam

Title: Re: I am going to scream!
Post by cekelle on May 11^th, 2006, 12:01am

Definitely get another opinion! I know it's a pain in the a$$, but try not to think of it that way. Take time to take care of yourself, and you will be able to take care of everything else later.

Title: Re: I am going to scream!
Post by pfunk on May 11^th, 2006, 12:02am

I agree. Find a different doc. The pred. tapers helped me get through this most recent cycle. Definitely find one that will talk about the preventatives and abortives as well. Best of luck and PF wishes.

Patrick

Title: Re: I am going to scream!
Post by rickyshot on May 11^th, 2006, 8:45am

Agree with the above. And go to ER. That is a good start for a CT scan or MRI which you need and a referral to a neuro. People generally do not go to ER playing. At the beginning of this nightmare I used to go every other day until someone did something. I could not take it. Oh I feel your pain for sure. Get going. Print out the info and pic on the Oxygen and take it to a new neuro. It took me five years at the beginning with mis diagnosis and docs who did not know what they were doing or did not care or both to finally hit a doc in ER who looked at me and my history and said. Honey what you have is serious (I am "blessed" with CH and complicated migraines and sometimes both at the same time which drive me mentally insane). If I only had this site to help me I would not have wandered around suffering needlessly not knowing what was wrong with me for five years and uncontrolled. It almost ruined my life. I lost jobs, was abusive to my kids etc. Please get help soon.

Title: Re: I am going to scream!
Post by sandie99 on May 11^th, 2006, 1:06pm

[smiley=hug.gif]

Wishing you PF time,
Sanna

Title: Re: I am going to scream!
Post by Bob P on May 11^th, 2006, 5:27pm

Steroids are a front line treatment for a rapid stopping of attacks. Only a short term (2-3 weeks) fix though.

Title: Re: I am going to scream!
Post by FramCire on May 11^th, 2006, 6:28pm

Help me out here. Why do you need a CT scan or MRI? Should I have got one? I have been diagnosed by a headache specialist (who was the 3rd doctor to confirm the diagnosis) and I was never sent in for one. (wait, I did have a CT scan my first cycle, but I didn't think it showed anything)

My suiggestion is to take the prednizone taper and once you have got a little sleep (at night), try 9mg of melatonin every night. It might be bad for a few nights but it hopefully will get better.

Caffine is great for me and before CH I couldn't injest caffine without getting sick to my stomach. Now, I love it when in cycle.

As for rest, I cant rest during an attack and a nap during the day usually ends in a worse hit.

Have you tried oxygen with the correct mask? How about imitrex injections?

I'll be praying for many PF days for you.

Title: Re: I am going to scream!
Post by chewy on May 11^th, 2006, 8:34pm

Quote:

She is putting me on steriods. My head is going to explode and she is acting like it is no big deal.

I have no idea why anyone is telling you to dump the Doc.

Steroids is a good call by the Doc. Ask her about a preventative as well.

Title: Re: I am going to scream!
Post by She-ra_mommy on May 11^th, 2006, 9:13pm

my face has been numb and the current Neuro does not take my pain seriously.That why they think I need another Dr. I am getting a second opion.

Title: Re: I am going to scream!
Post by FramCire on May 11^th, 2006, 9:52pm

chewy: Why the doctor has told her to stay away from caffine is my question. Otherwise prednisone is a very good call (at least it was for short term relief for me).

Title: Re: I am going to scream!
Post by deltadarlin on May 12^th, 2006, 9:30am

on 05/09/06 at 23:48:33, She-ra_mommy wrote:

I think my Nurologist is treating it as a migrain and not Ch.
I forgot to mention I am also a diabetic so steriod are not a good option for me. I also have had a bad reaction to Imitrex. My next appt at the nuro is may 25. My dh wants to take me to the hospital. I am fighting going I don't know what they will do to me. But on the kip scale I am 10. I don't know what to do? any suggestions?
[flash=200,200][/flash]

Steroids are not recommended for diabetics because it can block the effect of insulin which regulates the blood sugar.

With facial numbness and some of her other symptoms, her physician would be stupid and possibly verging on malparactive if he didn't order some tests to discover the underlying origins here.

Title: Re: I am going to scream!
Post by rickyshot on May 12^th, 2006, 11:27am

Yes Delta. She needs the tests to rule out anything else. But face numbness and stroke like symptoms are common to complicated migraines. I am one of those as well. Take it from someone who knows. Some of my migraine days are worse than the CH days and oh the job of the two for one days. >:(

Title: Re: I am going to scream!
Post by She-ra_mommy on May 12^th, 2006, 11:55am

I got into another Neuro for May 25. Here is hoping he is good.

Title: Re: I am going to scream!
Post by tanner on May 12^th, 2006, 12:27pm

I'm so happy that you are getting a second opinion. Just the caffeine comment warrants it in my opinion. Unless she thinks that you do not have clusters at all in which case caffeine could be a trigger.

As to Fram's ? about MRI's, CT scans and the like I just thought it was SOP to rule out life threatening conditions when a patient is reporting this intensity of pain. I had multiple MRI's, 2 Ct scans and an angiogram that went in at the groin area and passed a cam all the way into my brain before they finally agreed on a diagnosis.

How about you ricky? when I first came to this board I think I was the only one with atypical cluster/migraine variant. Did they put you through the whole gamut of tests? btw I'm very sorry to hear that you have both :'( ......tim