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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Any advice?
        
(Message started by: Saffy on Oct 10^th, 2007, 12:12pm)

Title: Any advice?
Post by Saffy on Oct 10^th, 2007, 12:12pm

I have been taking 75 mcg Dixarit for a year and 100mg Topamax for about 8 weeks. The Topamax worked fantastically until 10 days ago when I began a period of hot flushes, (I am peri menopausal.) I have recently been advised by one of you clever people that the flushes bring blood supply to the pain receptors and that is why I get more pain at this time.

The Dr. says I cannot up the Topamax as this is maximum dose.

Should I ask to try O2? Or is this one of those times where I just grin and bear it??? Caffienne is helping but only for about 20 minutes at a time. Hot bath as above. Cold shower over head, as above. Etc.

I am in pain at the moment Kip 2 to 3 or 4 from about 3am to 7am and can sleep on and off but in the day it has been Kip 3 to 8 quite alot of the time, from 7am until 5 or 7pm and I am trying to run my business and look after my family!!! The pain recedes but not for long I just keep getting hit nothing like a Kip 9 or 10 but not much peace!

Any advice

DR. appointment is 11am Wednesday 17th. (I think that is 6am your time.)

Saffy

Title: Re: Any advice?
Post by Kevin_M on Oct 10^th, 2007, 12:26pm

on 10/10/07 at 12:12:17, Saffy wrote:

The Topamax worked fantastically until 10 days ago

Should I ask to try O2?

I have on and off success with preventatives at times experiencing fluctuations for whatever reason. Oxygen is always a mainstay and would easily take care of the kip levels you mention. Good to always keep around, to mention, with a proper set-up. Sounds like the prevent is straining its capable limits at the present level with your circumstances.

and to mention of course, non-doctor opinion.

Title: Re: Any advice?
Post by DennisM1045 on Oct 10^th, 2007, 12:35pm

+1 on the O2!

It won't hurt you and it stands a good chance of helping a lot. It works for me every time. If not to knock the beast completely out then to at least bring it down to a bearable Kip range.

-Dennis-

Title: Re: Any advice?
Post by Saffy on Oct 10^th, 2007, 2:33pm

Thanks guys I will attempt to do the impossible and convince the illogical that I require the obviously useful!

Somehow I still expect to loose the argument.

Saffy

Title: Re: Any advice?
Post by luveemom on Oct 10^th, 2007, 3:05pm

Hi Saffy,
Not sure why your Doc said 100mgs is the max dose on the Topamax??? I am at 200mgs per night and know people who take up to 400mgs. Maybe it is because of the other drug.....you should ask why? Sorry you are feelin' crappy.....I would definitely ask for o2.....We all swear by that for sure.....it doesn't always work as one of my previous posts says, but I would never give up having it here as an abortive.....sometimes I just have a wicked cycle.....good luck and get that o2....
alicia

Title: Re: Any advice?
Post by Saffy on Oct 11^th, 2007, 10:18am

Saw a different doc to usual.

He actually did some good listening although did try suggesting that my headaches were caused by stress at one point and I think he wanted me to consider a career break.....!

He understands that I need to try to improve my standard of comfort when things are at their worst and will look into O2, it is new to him. Also will look in to other possibilities and apologised that it would take a few days.

I am delighted with that, if I really get useful info from him in a few days it will be a great breakthrough for me.

I am actually MUCH better today. the hot flushes are almost gone and therefore the Topamax is able to calm the CH right down to Ohh so nice and bearable.

P.S. An aquaintance suggested I clear my Chakras yesterday when I was REALLY bad, that it would definately be a great help to my headaches. I have awarded myself an unofficial gold star for not decking the twerp!!!

Saffy

Title: Re: Any advice?
Post by Ctech on Oct 11^th, 2007, 11:44am

Dealing with ignorant people is bad enough without having to deal with incompetent doctors as well.

-Ctech

Title: Re: Any advice?
Post by ski2k on Oct 11^th, 2007, 11:53pm

At least you saw a doctor that was willing to listen, and not tell you he knows everything. Keep pushing for the O2, and try to get your doc to do a little research. If you can, print out the O2 info from this site and give it to him. If not, give him this sites address and ask him to do a little reading on his own.

Best of luck!
Adam

Title: Re: Any advice?
Post by Kevin_M on Oct 12^th, 2007, 12:13am

on 10/11/07 at 10:18:07, Saffy wrote:

He understands that I need to try to improve my standard of comfort when things are at their worst and will look into O2, it is new to him. Also will look in to other possibilities and apologised that it would take a few days.

In case he's slow with attending to this, (as mentioned above) there are studies I'm sure here that can be printed off and e-mailed to him. OUCH has a good section on that, an option to check over to the left. He may be grateful for saving him the search and time. And chances are a decision from him upon inspection that will dispell any reason to think otherwise. ;) We have to be a bit active minded with docs, especially when you say it is "new to him".

Glad for the settling of activity, sometimes a worried mindset can aggrevate things. His bit of reassurance seemed helpful in that regard as well as hot flushes diminishing, but getting and having the oxygen will be much more of a continued future assuance with it around. ;) This condition fluctuates at times and hoping no regrets for you having the ability to have access to it close by when needed. You'll be happy with how it is effective and grateful to be able to attend to conveniently when needed, also.

Continued well to you. :)

Title: Re: Any advice?
Post by Saffy on Oct 12^th, 2007, 3:06am

Thanks everyone for your kind thoughts, vast CH knowledge and replies.

A member of this forum had already explained to me the reason I get more pain when I am having hot flushes.

It is because there is improved blood supply to the pain receptors. It was SUCH fun having that sort of knowledge up my sleeve to impart to the doc. That kind of know how really makes a difference as well because I know that when the flushes diminish the CH is likely to go with it - and it did.

So I didn't push as hard as I otherwise would have to up my Topamax dose. If I had I would probably now be taking more than I needed. So BIG THANKYOU!!!

Saffy In a good mood ;;D
I love this site!