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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> ???/updated 11-23-05
        
(Message started by: KMT on Nov 15^th, 2005, 11:59am)

Title: ???/updated 11-23-05
Post by KMT on Nov 15^th, 2005, 11:59am

Hey

I want to appologize for not being a good supporter to everyone lately/ around much lately.

I don't have the energy with the pain of switching sides or so I think & its being a real dosey. Been getting piercing pains so bad and so sudden that I just want to scream. Funny thing is it isn't just on my usual Left side but has also been happening on the right. Not at the same time but like it wants to take turns. Last night I had the most god awful pain right behind my Right ear and got hit from there. :-/ :'(

I am not posting for sympathy just want to know if any of you know how long I am going to be in this limbo phase of not knowing which side of my head is going to get hit...Of course we are all different . But just the same can those that have experienced this post how long it took them to officially change. Am just curious.

Thanks all....Kim

Title: Re: ???
Post by zanychef on Nov 15^th, 2005, 12:02pm

sorry kim cant help you on that one :'( :'(
but hey i'll send you twice the vibes. ;;D ;;D(the ones for the left got the x's on them;) )
zany

Title: Re: ???
Post by E-Double on Nov 15^th, 2005, 1:02pm

Kim,
You may want to consider having one of the dr's at the hospital you are training at have a look at you.

It's time for someone new!!!!!!!!!!!!

Title: Re: ???
Post by nani on Nov 15^th, 2005, 1:50pm

Kim, I gotta go with Eric here. I think it's time to see a new dr.
I've had episodes on the "other" side, and I sometimes get "ping-pong" shadows. I've never had ping-pong hits.
Your meds aren't really working for you, and some of your descriptions are atypical, maybe a new doc and new meds (or a good try at an alternative) are what's needed.
pf wishes, nani

Title: Re: ???
Post by bnfreeman on Nov 15^th, 2005, 2:22pm

Kim-

I got hit like that last winter. I wasn't on any preventatives either. Just used trex and O2. It went on for 5 months. Now they just stay on the right side. It was about the same time I got a new doc. But like you said everyone is different. Hope you have some relief soon!

Brandi

Title: Re: ???
Post by KMT on Nov 15^th, 2005, 3:59pm

Hey all

To answer the advise on a new doctor, I will be seeing a new neurologist on the 1st of December. Not to far away I guess. Recently I saw a different Doc other then my usual because mine is on maturnaty leave and she was so apprehensive it wasn't even funny. I mentioned Lithium and she said she didn't feel comfortable perscribing that for a Head ache. :-/

Nani
Quote:

I've had episodes on the "other" side, and I sometimes get "ping-pong" shadows. I've never had ping-pong hits.
some of your descriptions are atypical

So what I am experiencing is not normal to CH? :-/

Brandi
Quote:

I got hit like that last winter. I wasn't on any preventatives either. Just used trex and O2. It went on for 5 months. Now they just stay on the right side.

Nice to hear that I am not alone in this. Thanks for your reply.

Thanks :'(

Title: Re: ???
Post by nani on Nov 15^th, 2005, 9:27pm

Quote:

Last night I had the most god awful pain right behind my Right ear and got hit from there.

That's the part that struck me as "atypical" in this post. Every now and then you post something that makes me wonder if you don't have more than one kind of headache going on sometimes. I'm just thinking out loud here...which is why I think it's time to see another dr. I'm glad that's coming up soon. Are you keeping a headache diary? This would be the time to start if you aren't. hugs and pf wishes, nani

edited for spelling

Title: Re: ???
Post by bnfreeman on Nov 15^th, 2005, 11:30pm

Nani could be on to something. I know I have migraines too. Right now I have a "new" kind of headache going on that I will talk to my doc about on Thursday. I am also going to ask to be put on the list for a head transplant. Good vibes coming at ya!!

Brandi

Title: Re: ???
Post by KMT on Nov 16^th, 2005, 7:41am

Nani, Brandi, and Eric

Have to admit that the last few days have been different then I am use to. I am usually use to a reve up to the pain. Lately some of it has been so strong with so much pressure for long periods of time and somewhere in there they escalte to a wopper of a hit out of no where. Tried Trex 2mg and had to go up to 8mg and finally it died down some plus Melatonin and Verapamil helped with sleep. I know that I am shadowing bad at night because I dream that I am about to get hit. Sleeping in the recliner and so on.

Nani the Right ear thing was definitely strange no doute about that.

Lord only knows what is going on with me, but I am ready for it to stop by any means.

Thanks for the impute.

Kim

Title: Re: ???
Post by KMT on Nov 16^th, 2005, 7:43am

zany
Quote:

sorry kim cant help you on that one
but hey i'll send you twice the vibes. (the ones for the left got the x's on them )

[smiley=hug.gif]TY Zany

Title: Re: ???
Post by kcopelin on Nov 16^th, 2005, 10:47pm

:'(Kim I'm so sorry to hear you're getting hit from all sides in so many ways. Will be praying that your new doctor has some insight into headaches and that you get relief soon.
Kathy

Title: Re: ???
Post by KMT on Nov 17^th, 2005, 10:15am

Thanks Kathy

The story of my life. I hope the new doc has insight as well. Am losing confidence and am more sceptical but trying to remain positive.

Take care....Kim

Title: Re: ???
Post by Chonas on Nov 18^th, 2005, 11:37am

My last cycle began as usual on my right side, it was shorter than normal it stayed there, the way we all know, during 2 months, I was happy when it began to fade away in such a short time, but... all of a sudden it started again but now on my left side and it took 4 extra endless months to recover. It was the first time that it switched sides in 15 years, now I know it works
fine on both sides.
My actual cycle has not been treating me nicely, it happens to be one of those very bad ones, but I'm entering the 4th month and it should be close to its end.

Title: Re: ???
Post by zanychef on Nov 19^th, 2005, 2:47am

sending you vibes too chonas ;;D ;;D

Title: Re: ???
Post by Jasmyn on Nov 21^st, 2005, 10:10am

Kim, I'm so sorry that you get no break from this! :'(

Like Eric said I also think it is time for something new or like Nani said an alternative treatment.

<<<<<<<<<<<<<Vibes and Hugs>>>>>>>>>>>>>>

You just keep on talking to us.

Title: Re: ???
Post by KMT on Nov 21^st, 2005, 10:19am

:'(Oh if this is somthing new :'(I'd give anything to know what it is and how to make it stop. :'( I don't get it but what I do get is I hurt so bad. :'(Couldn't sleep well last night woke up early this morning. :'(If it is the beast, he is toying with me and I am fed up. :'(Please please make it stop.... :'( :-/Think on the board out loud.

Dec 1st in the AM Neuro appt. (10 :'(days :'(away) :-/

Take care everyone. Kim PF wishes to you all

Title: Re: ???/updated 11-21-05
Post by unsolved1 on Nov 21^st, 2005, 12:33pm

For my first 12 years as a clusterhead, I got hit on the right side only. Then, out of nowhere, I was getting hits on the left side about 75% of the time for about 2 years. Now, they have settled on the left side 100% of the time. "Ping-pong" hits are possible, I'm living proof :-/

PF Wishes
UNsolved

Title: Re: ???/updated 11-21-05
Post by MJ on Nov 21^st, 2005, 1:17pm

Hi Kim.

Sorry to hear your getting hit so hard.

Looks like you have been around here a long time and heard a lot of tricks over time.

I have never had the pain switch sides but I certainly know where your at in frustration levels.

Sleep for me has been down to about 2 hrs past few days. Pain and attacks have been allmost non stop for a few weeks now. Levels have been extreme.

I am also unmedicated in any way right now. By choice.

The reason I bring this up is that in the past allmost all the meds including trex caused additional problems beyond our normal though extreme CH. (In addition for me they had no effect on stopping, lessening, or preventing an attack).

Having had a lot of pactice and only my own feelings to go on The effects ranged from being constant shadow, to a foggy head that was unable to focus in any way. Which in turn of course made the pain totally unbearable and the ability to recover nil.

I have to wonder for you, if whatever meds you are taking might be increasing the issues of pain, shadow and recovery.

Considering whats been said above you might strongly look at how each med affects you other than just controlling an individual attack. Might indeed be time for a complete change in your medications. A good discussion for the doc. The preventative drugs would be the first to look at and maybe the trex has to go too.
Might be other drugs wich work well as replacements.

I am not at all suggesting you go unmedicated cause it still hurts like hell but for me it is far easier to deal with pain and recovery without other medicinal influences that muck up and confuse what we feel.

wishing you some better days.

MJ

Title: Re: ???/updated 11-21-05
Post by KMT on Nov 23^rd, 2005, 9:52pm

:-/ :'(Hey all me again just checking in. Not sure what is going on with my head. Yesturday in the middle of working out after 25 min. I got this sharp pain unlike what I am use to on my right side of my head which again is the opposite of my normal. Following that the pain continued and I got so shakey that I couldn't even type a words. I got weak. Still getting stuff on the left. Who knows. If any of you have any insite please share...TY

Take care and PF wishes.......Kim