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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Frustrated and venting....Thanks
        
(Message started by: E-Double on Dec 8^th, 2004, 12:49pm)

Title: Frustrated and venting....Thanks
Post by E-Double on Dec 8^th, 2004, 12:49pm

Ugh......
The past 2 nights.......
To be honest I don't know what's going on with my head......It's not majorly misbehaving but it hurts nontheless. I don't know if I'm getting ready to start revving up again or if this is how it is just going to be. Despite this being my longest cycle ever (near 7 months), it is my very first cycle on medication and I'm sick of it! I have so many questions with the meds and don't know where to begin. Dr. wants me to try Topamax. I don't....I can't risk the side effects.....whether that is just being too educated or fear I don't know. He does want me to go for a full cardiological if we are going to push the verapamil over 360. I recently went back up to 240 (had started tapering down since was feeling decent and wanted to see what I could get away with prior to wedding)
when the twinges started getting harder. No clue! Part of me just wants to come completely off and see what will happen.
Who the hell knows but I'm scared for the first time in a long time and not very positive...pushing depression.

Thanks 4 listening.

Eric

Title: Re: Frustrated and venting....Thanks
Post by amct15 on Dec 8^th, 2004, 12:55pm

Hey Eric,

Just a thought on this, I'm in Jersey and have had a couple rough days this week as well. More frequent hits than usual, all in the k2-k4 range. We've had some fairly crappy weather here the past couple days, I'm assuming you've had at least similar weather in NY. Do you think there could be any connection with the HA's and the weather? Keep up the good fight. Vent anytime.

Andy

Title: Re: Frustrated and venting....Thanks
Post by eddie on Dec 8^th, 2004, 1:01pm

i hope it gets better for ya
eddie

Title: Re: Frustrated and venting....Thanks
Post by broomhilda on Dec 8^th, 2004, 1:26pm

:-/ Big hugs Eric [smiley=hug.gif]

Fingers crossed its just the ending, final battles so to speak, pm me if you need to talk k?

PF wishes to you...

Title: Re: Frustrated and venting....Thanks
Post by Lizzie2 on Dec 8^th, 2004, 1:28pm

Hugz Eric,

I hear ya on this one. Been in living headache hell for the past 3 weeks. Even my boyfriend doesn't want to deal with it...real nice. He feels that he wants to focus on US and not on the headaches...well too bad the headaches are a part of me! <sigh>

I wish I had some answers for you, but I don't! My doc just has me get EKGs every time I go up over 480 on the verap. The only thing I consistently get on EKG reports is that I have an abnormally high QRS voltage. But I really don't even know what that means! I've been having that turn up on my EKGs for a long time.

Anyhow...just wanted to say hello. Topamax is a tough med. I'm trying to think of what other suggestions to try. That one is always listed, as is melatonin, verapamil, Depakote, and Lithium. Depakote works well for me but has some evil side effects. Have you tried verap and lithium together? It's always an option to talk to your doc about!

Well anyhow, I'm taking the day off. Currently watching "Eight Crazy Nights" on HBO and sitting here in my jammies since I got all ready to leave for clinical at around 5am and then got a message that our instructor cancelled, so I'm just chillin.

My big neuro appt is tomorrow. Lots going on!

Hugz to you and happy Chanukah...relax a bit if you can. :)

Carrie :)

Title: Re: Frustrated and venting....Thanks
Post by Gator on Dec 8^th, 2004, 3:11pm

Damn! Sorry to hear your head is misbehaving on you. Can definitely relate to the depression bit. Remember that you have a boatload of family here (including me) to talk things through. Keep us posted.

Gator

Title: Re: Frustrated and venting....Thanks
Post by nani on Dec 8^th, 2004, 3:45pm

Shit, Eric....that bites! Hang in there... [smiley=hug.gif]

Title: Re: Frustrated and venting....Thanks
Post by cschick on Dec 8^th, 2004, 4:03pm

oh, Eric. I feel so much for you. I hope you get some relief soon. Do you use o2? I'm no expert so all I can offer are hugs and prayers and vibes.

You are added to my prayer list - is that ok? I know you are Jewish and I don't know the protocol. Tell me please if I am out of line.

[smiley=hug.gif],
Karen

Title: Re: Frustrated and venting....Thanks
Post by Langa on Dec 8^th, 2004, 4:24pm

HI Eric:

I'm also in NY. Been over my cluster bout over a month and the last two nights weird twinges. Yesterday the twinges were bad and lasted about 20 minutes. I was freaking out thinking one was coming. Nothing today.

I'm thinking the weather being as crappy as it's been was the culprit. Here's hoping that's the case for you too and nothing more. :-/

Langa :)

Title: Re: Frustrated and venting....Thanks
Post by E-Double on Dec 8^th, 2004, 7:30pm

Thank you all!!!!!!
Helped to get that out!

PF wishes!

E.

Title: Re: Frustrated and venting....Thanks
Post by Biker on Dec 8^th, 2004, 8:40pm

I watch that berometer. When it gets so low, I brace for CH. Happens usually just before a large storm comes across my area, and tends to continue till clear weather returns. Not all storms, just the big pressure dropping real fast storms.

Title: Re: Frustrated and venting....Thanks
Post by Mr. Happy on Dec 9^th, 2004, 12:07am

on 12/08/04 at 12:49:40, E-Double wrote:

Who the hell knows but I'm scared for the first time in a long time and not very positive...pushing depression.

It's called marriage,
RJ

Title: Re: Frustrated and venting....Thanks
Post by jillybean on Dec 9^th, 2004, 12:33am

I am a supporter. Chiming in without truly understanding, I know... [smiley=bag.gif]

Hubby also has severe triggers associated with weather. I am reading a lot here, but haven't seen a lot more re: this subject and if can lead to any particular treatment response- preventative strategy.

Thoughts? [smiley=bomb.gif]

Eric: so sorry. sending pf thoughts your way. [smiley=jammin.gif]

Jill

Title: Re: Frustrated and venting....Thanks
Post by nani on Dec 9^th, 2004, 12:39am

Hi jilly- welcome and thanks for being a supporter. What would we do without you guys? Is hubby diagnosed? Has he had any meds prescribed? Look around on the boards here and at the OUCH site, there is a lot of info. Tell us more and we can help. When you have questions, start a new topic and you'll get lots of responses.

Title: Re: Frustrated and venting....Thanks
Post by karma on Dec 9^th, 2004, 7:19am

Eric,
I was on a short course of verap and was up to 480/day. I gave it up when I wasn't staisfied with the results. I tapered down over a couple days and was pretty uncomfortable for a couple of days not knowing if things would get worse or not. After about three days of being off the med all symptoms disappeared.
My adivice would be to try and get med free before increasing the meds.
Tough choices I know it may be worth a try.
Good Luck

Title: Re: Frustrated and venting....Thanks
Post by Bethany1 on Dec 9^th, 2004, 8:27am

[smiley=hug.gif] Hugs Eric, Hope it gets better for ya.

--B

Title: Re: Frustrated and venting....Thanks
Post by Bob_Johnson on Dec 9^th, 2004, 11:52am

Eric, I'm always concerned to see folks reject a med because of "side effects" because they often confuse the list of POSSIBILITIES with the actual PROBABILITIES of any specific event. If you could read the actual experiences of patients you would see that the rate of side effects with Top. is fairly low. (I just reviewed PubMed and found a couple of clinical reports showing side effects with Top which lead the person to stop using it ranging from 6 to 14%.)

No med, from simple aspirin on, is free of side effects and the more potent, new ones we are trying for Cluster likely have a higher rate. But it's always an issue of MONITORING your body for side effects as we weigh the risk vs. the potential benefit/relief. You are correct: sometimes a little knowledge can induce needless fear/paralysis. I hope you will discuss your concerns with your doc rather than assume that your fears are realistic.

Title: Re: Frustrated and venting....Thanks
Post by ArCane on Dec 9^th, 2004, 1:36pm

Prayers and PF vibes heading your way Eric. I hope you get to feeling better.

Title: Re: Frustrated and venting....Thanks
Post by lionsound on Dec 9^th, 2004, 4:22pm

Rx for MR. EEEEEEEE. Diamond:

one [smiley=hug.gif]

take as many times as needed for support.

Be well, my friend.