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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New Member - HELP!
        
(Message started by: TimJohnson on Jul 26^th, 2004, 12:34pm)

Title: New Member - HELP!
Post by TimJohnson on Jul 26^th, 2004, 12:34pm

Good Morning!

I am a new CLUSTERHEAD MEMBER to the website! I have had clusterheadaches for 11 years. I went through various doctos who told me I had migraines, tension headaches, etc. I went through all of the bullshit meds until I began doing my own research and found out about clusterheadaches.

I am currently in a cycle. It has been going on for about two and one half weeks. I am under the care of a neurologist who treats me with VERAPAMIL 240mg daily/ TOPAMAX 200 mg per day DAILY. I have Maxalt for the headaches when I get them. I cannot get her to give me IMITREX althought it was semi-effective I tended to use it too much for the pain. She has prescribed AXERT. It is new - I have not picked it up as it is too expensive. I have mentioned OXYGEN to her but have not been successful as of yet. I experience side-effects with TOPAMAX such as slow recall, etc. What VERAPAMIL side effects do others experience?

I wanted to say HELLO! Get all of my symptoms out there! I am having shadows right now! And ASK FOR SUGGESTIONS AND HELP!!!!!!!

Tim

Title: Re: New Member - HELP!
Post by marfanoidus on Jul 26^th, 2004, 12:39pm

Hey Tim,

You'll get all sorts of advice on the meds from other members, so I won't elaborate on them much. I'm taking Verapamil, and I'm not having any side-effects that I'm aware of.

As for you doctor and the oxygen - DO NOT TAKE NO FOR AN ANSWER!! It helps a lot of people. I'm surprised a neuro would hesitate on it unless, dare I say it, your neuro isn't wholly up to date on cluster therapies???

One point I like to make is that since CH is rather rare, don't make the mistake of assuming your doc/neuro/GP/whatthehellever is fully versed in their treatment.

good luck to you man,
walt

Title: Re: New Member - HELP!
Post by don on Jul 26^th, 2004, 1:53pm

Is she withholding the imitrex beacuse you were using to much or for other reasons?

I ask this because while under the care of the Chief of Neurology in one of Boston's finest teaching hospitals, he withheld imitrex injections. Why? He thought they were harmful.

Fired him on the spot.

Title: Re: New Member - HELP!
Post by TimJohnson on Jul 26^th, 2004, 1:59pm

No not at all - I was having a serious bout of clusters (several a day) she would only give me six or eight at a time. My insurance would only pay for that amount per month. I was going through them per headache and she thought I was using too much! My argument was, "You aren't having the damn headaches!" I should probably go have a second opinion. Although I have gotten farther with her with treatment then with any other physician. I have just gotten through a remission period of 14 months. She was the first doctor to treat me with VERAPAMIL and TOPAMAX.

Title: Re: New Member - HELP!
Post by TimJohnson on Jul 26^th, 2004, 2:00pm

I guess I was using too much - per headache is too much if I was using more than two per day

Title: Re: New Member - HELP!
Post by alleyoop on Jul 26^th, 2004, 3:05pm

Hi Tim,

As far as the Imitrex goes, if you haven't already, check out the link on the left (imitrex tip). That will stretch your injections (if that's what you were using) out and should keep you from using too much in a 24 hr period.

I had a problem with my insurance(BC/BS) not wanting to give me but 2 refills for my inject pack per mo. My neuro wrote them a letter telling them that I was chronic and citing the incidence of suicide. Next thing I knew, I was getting 30 refills per mo!

Trex is some nasty stuff and the less of it you have to take, the better. But for some of us, it seems to be the only abortive that works. Have you tried o2? Not only does that seem to work for the majority of sufferers, but it is also a whole lot easier on your body. Again, see link on left (oxygen info). You might also want to try Zomig nasal spray.

As far as side effects from verapamil goes, watch out for shortness of breath, light-headedness, dizzyness, swelling of ankles or legs. I'm sure the list is longer, but that's all I can remember. With the low dosage you're taking, I doubt you'll have any problems. I'm taking 720 mg a day and I have had some swelling in my feet, although that could be due to the lithium I'm taking- or both.

The best advice that I can give you is to read every link and thread you can on here. If you see something that seems to apply to you or that you want to show your MD, print it out. If you don't feel that your doctor is listening to you or understands what you're dealing with, fire him and get another one!

Best of luck and wishing you PFNAD.....................

.......................................................................alley

Title: Re: New Member - HELP!
Post by Superpain on Jul 26^th, 2004, 5:46pm

Let's see...
Doc won't prescribe trex or O2... [smiley=huh.gif]

Don't walk... Run! Get a new doc.

Title: Re: New Member - HELP!
Post by Ernie_Moss on Jul 26^th, 2004, 6:09pm

Verapamil side affects may vary, but constipation, weight gain and severe decline in libido is what I have experienced. I would push the doctor for O2, it too is expensive, but does work for me on the attacks.

Title: Re: New Member - HELP!
Post by Kris_in_SJ on Jul 26^th, 2004, 8:41pm

Hi Tim,

Sorry you are suffering right now. I would only ditto what's been said.

Run, don't walk, to get a second opinion - preferably from someone who specializes in Clusters. Until then, either swear an oath to your doc that you won't use more than 12mg of Imitrex/day (and use the tip to the left), or demand a script for O2.

Read the links referred to on this board, especially as they relate to meds and CH. Take the printouts to your doc. Be proactive! Can't say it enough - the combined knowledge on this board far exceeds that of many docs and neuro's.

Hugs and best wishes - keep us informed,

Kris

Title: Re: New Member - HELP!
Post by UN_SOLVED on Jul 29^th, 2004, 12:08am

I agree ... Leave that Doc.
Imitrex is my only relief. I'd never let them stop letting me have it ... " Give it to me or i'll take it !! "

Verapamil side effects: decrease in heart beat and blood pressure. May cause dizziness when standing up too quick. I would also say this would not apply to you since you take a low dose.
See WebMD (http://my.webmd.com/hw/drug_data/d00048a1.asp?bn=Verapamil%20%20(oral))

Topomax ... dope-uh-max ... kidney stones ... weight loss ... hair loss ... etc. etc. etc .. (someone stop me). Not everyone experiences these side effects and it helps keep the beast in check for some !!
See WebMD (http://my.webmd.com/hw/drug_data/d04115a1.asp?lastselectedguid={5FE84E90-BC77-4056-A91C-9531713CA348})

Unsolved

PS...All my docs know I use way more than 2 Imitrex injections per day ... ::)