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Sonnie

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Trying to get it Right
Mar 3^rd, 2009 at 7:25pm

I noticed that my cycle has changed dramatically. I've had more hits this year than I've had in the last 3+ years and it's only March.

My neurologist first prescribed me Imitrex injections but I was highly allergic to it....it wasn't pretty! Embarrassed

Next I tried Zomig, which did nothing but bring on CH after CH. That was downright misery! Undecided

Today I went back to the neuro and now he's prescribed Topamax cuz he said he wanted to try a prophylactic this time. I sure hope this works for me!!!

He still isn't keen on giving me the O2 yet, but I'll keep pestering him.

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ClusterChuck

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Re: Trying to get it Right
Reply #1 - Mar 3^rd, 2009 at 8:44pm

Sonnie wrote on Mar 3^rd, 2009 at 7:25pm:

I noticed that my cycle has changed dramatically. I've had more hits this year than I've had in the last 3+ years and it's only March.

It is not unusual for your clusters to change, over the years. Sometimes it is a drastic change, and other times, it is a gradual shift from one type, or frequency, or intensity, to another.

Sonnie wrote on Mar 3^rd, 2009 at 7:25pm:

My neurologist first prescribed me Imitrex injections but I was highly allergic to it....it wasn't pretty! Embarrassed

Next I tried Zomig, which did nothing but bring on CH after CH. That was downright misery!

This, again, is not an unusual reaction to those triptans.

Sonnie wrote on Mar 3^rd, 2009 at 7:25pm:

Today I went back to the neuro and now he's prescribed Topamax cuz he said he wanted to try a prophylactic this time.

Preventatives are a GREAT route to attempt! I am surprised that your doctor has not tried this before now.

Topomax is not an unheard of treatment. It works VERY well for many people. But, there are many other routes to go, also.

One of the most popular, is a Prednesone taper (that works in your body within a day or two) and then, at the same time, another medication, such as Verapamil (because it takes up to two weeks for it to become effective). Once the Prednesone taper is completed, with any luck, the Verapamil will have kicked in.

Sonnie wrote on Mar 3^rd, 2009 at 7:25pm:

He still isn't keen on giving me the O2 yet, but I'll keep pestering him.

I think it is time to find another doctor! He is VERY willing to prescribe medications that have possibly SEVERE side effects, yet he won't prescribe something that is safe, cheap and VERY effective?

This sounds like some one who does NOT know the proper treatment routes, and is unwilling to listen to suggestions from you.

Can him!

Chuck

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Marc

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Re: Trying to get it Right
Reply #2 - Mar 3^rd, 2009 at 9:09pm

Sonnie wrote on Mar 3^rd, 2009 at 7:25pm:

...........................

He still isn't keen on giving me the O2 yet, but I'll keep pestering him.

If it works for you like it does for me, you will be very angry that your doctor let you suffer needlessly - once you try it.

I don't know how badly you are hurting, but in your place I would be doing more than pestering him.

Marc

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Charlotte

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Re: Trying to get it Right
Reply #3 - Mar 3^rd, 2009 at 9:19pm

Is the preventative helping at all?

If you think your neurologist is trying to help and learn about ch, keep him and invest time in educating him, especially about O2. Mine was a slow study on O2 but eventually prescribed it.

If you think your neurologist is not interested in helping you, then you should find another - because this person works for you and should want to help you.

Good luck, kid. It is not as easy to communicate as some of us think. Just keep trying.

Charlotte

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« Last Edit: Mar 3^rd, 2009 at 9:20pm by Charlotte »

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Linda_Howell

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Re: Trying to get it Right
Reply #4 - Mar 3^rd, 2009 at 9:36pm

Quote:

I don't know how badly you are hurting, but in your place I would be doing more than pestering him.

I'm right behind Chuck and Marc on this. Stop pestering and INSIST! read the 02 button to the left of here in yellow, print out the pertinent parts because most Dr.s won't take the time to read a lot, present it to him and tell him if you don't give me a script for 02 I'm gonna find some on the black market. See what he says. LOL

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Skyhawk5

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Re: Trying to get it Right
Reply #5 - Mar 4^th, 2009 at 12:33am

Ask the Dr. if he has read the NATIONAL GUIDELINE CLEARING HOUSE instructions on treating CH. If not it is in his/her responsibilty to do so, if they are treating you for CH. Oxygen is the safest and most common abortive for CH.

If the Doctor is not aware of this they are not aware of modern CH treatment. Like others have said fire them or get what you need from them. Period.

Don

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« Last Edit: Mar 4^th, 2009 at 12:43am by Skyhawk5 »

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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Bob Johnson

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Re: Trying to get it Right
Reply #6 - Mar 4^th, 2009 at 7:31am

Agree strongly that a preventive is needed but would push to start with Verapamil first because of the lesser side effects profile.

Print out the Rozen article for the doc, you keep one.

Point out to him, use of Zyprexa (olanzapine) as an abortive. Very fast and effective for a number of us. (In Rozen)
=======

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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Bob Johnson

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Guiseppi

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Re: Trying to get it Right
Reply #7 - Mar 4^th, 2009 at 8:39am

Welcome to the board. Sadly you suffer from a rare disorder. You must educate yourself, then find a doctor who will form a partnership with you to come up with a treatment plan. Just sitting down in front of a doctor and saying "fix me" is a recipe for a boatload of pain. If your doctor won't listen to you, finding a doc who will can alleviate a great deal of pain.

Wishing you luck on your journey.

Joe

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E-Double

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Re: Trying to get it Right
Reply #8 - Mar 4^th, 2009 at 12:35pm

I second and third Bob!!!

The reality is that many of us have to educate our doctors.
If he has the g*d like mentality then you need to find a new one.
If he is willing to be educated and learn how to properly treat you then you are set.

That being said, you first have to educate yourself to the extreme.

read what Bob posted and print it out.

good luck and pf wishes

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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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Kimmie

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Re: Trying to get it Right
Reply #9 - Mar 4^th, 2009 at 1:42pm

It's crazy sometimes, as i believe i have a more broader knowledge of CH than the doctors. After finding this site a year ago i have learned so MUCH! I'm guessing at least 80% of us go to our neuro's and are educating them. I've wondered and wished i could find a Neuro who HAS CH. I have a 10 yr old son who has CH (from me). He is in all the gifted classes and we have talked about him becoming a neuro when he grows up!
I hate that he has CH, but if he does grow up to become a neuro, think of all the sufferers he would be helping, heck MAYBE even find a cure.
OK...nuff babbling. Do not can your neuro. Educate him while educating yourself, and don't print out too many pages of information per visit, as most of them will not read it, they may glance some of it, but not all.
I pray for your HA to end soon so you may resume your normal life.
In the meantime, stay around here and READ, READ, READ!!

All my best to you. Smiley

Kim

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Katie

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Re: Trying to get it Right
Reply #10 - Mar 4^th, 2009 at 4:15pm

Hi Sonnie,

Triptains are very good for those they work for but they do not suit everyone. I am so sorry you found out imitrex did not suit you the hard way.
I can use naratriptain [migraine only], rizatriptain [either] or sumatriptain [CH] but other forms of triptain have not suited me or tackled the pain.
Educate yourself on triptains.

I also have topamax but that is not normally the first drug of choice for CH or migraine.
It can help reduce the level of pain and frequency of hits but I found it does not stop them totally.
Did he explain his reasons for using this drug in your particular case?
Has your doc warned you this is a slow step up drug that will take time to work ?

Push insist and demand the 02 esp. as the triptains have caused your problems.
I found 02, ice and a strong coffee after made life a lot more bearable on those bad days.

Hope you find some relief soon.

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Pain is no evil unless it conquers us.

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Sonnie

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Re: Trying to get it Right
Reply #11 - Mar 5^th, 2009 at 4:34pm

Thank you for your input and suggestions. I'll read the info that Bob (thanks Bob!) posted. Educating myself and the doctor is what I'm going to have to do.

Having just been diagnosed last month, all this is new to me. Also, I'm not exactly an aggressive person by nature, but now I'm beginning to understand how much I'm going to have to go against my grain and really push this. I definitely have my work cut out for me, but I'm known to be very stubborn at times.

Quote:

Is the preventative helping at all?

I just started it a few days ago. How soon should I be able to tell? It is making food seem gross to me already..... Undecided

Quote:

It can help reduce the level of pain and frequency of hits but I found it does not stop them totally.
Did he explain his reasons for using this drug in your particular case?
Has your doc warned you this is a slow step up drug that will take time to work ?

Yes he explained this to me. The reason he chose the preventative is because my CH attacks are more frequent than before. In previous years I'd get 2-3 CHs per day for 3 days, skip a few months and have another bout. Now I'm having 2-4 per day, nearly every day. As for why he chose Topamax, I don't know.

Thanks again! Anything else you can share with me will be much appreciated.

Sonia

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Batch

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Re: Trying to get it Right
Reply #12 - Mar 5^th, 2009 at 7:35pm

Sonnie,

Your neurologist is denying you one of the most effective, least invasive, and least expensive treatments for acute cluster headache attacks recommended in the Standards of Care for our disorder.

Either demand a prescription for oxygen therapy from your neurologist or find another doctor or neurologist that will write you one on the spot. It's that simple.

Send your neurologist the following and if he refuses to prescribe you oxygen therapy, ask for his refusal in writing. And if your neurologist refuses to give you the refusal in writing, run, don't walk and find another doctor or neurologist.

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You can call up the above sample prescription for oxygen therapy at the following link so you can print it out.

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Take care and please keep us posted.

V/R, Batch

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