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Topic: Hi there, I'm new here and not doing so well (Read 473 times) |
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Kevman
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Hi there, I'm new here and not doing so well
« on: Mar 29th, 2006, 11:18pm » |
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I'm Kevin,
I'm 35 now. Been having these things since I was 12 or 13. My cycles have varied in length over the years and pain free time has also varied.
I got a "warm up" cycle from about mid Dec to mid Jan. Maybe 2 a day then none for 3 the 1 for 2 days. real erratic. My neuro saw me pretty quick (he's a new one) and seemed to have a cluster clue. I knew my cycle was weird though... it just stopped after about 3 and 1/2 weeks...no headaches...No more Imetrex anxiety (a big issue for me).
They came back..son of a gun...I knew it...
Now here I am at the end of March gotta be one of the longest cycles I've been through. 2-3 a day. I'm having some big time trouble focusing on ANYTHING but waiting to catch the next demon before it cripples me. I feel like it's my sole function..to sit there with the friggin' imitrex (i know the Qtip trick) and wait for the shadow to step out and give me reason enough to stop it. Just so I can function as a human for a few hours while I know it is at bay. I tend to stay up...all night waiting for the middle of the nighters now to.. I know this can't be healthy. I'm loosing it folks. I can't handle letting them get full blown anymore.
I am so sick of sleeping on the futon downstairs so I don't wake up the kids (or wife) with the demons...I'm so sick of the kids seeing me cry like a baby and shake and thrash. My boss is the best and is super cool and understands (kind of) and has seen me go from 0-60 before. She has even found and given me my shot (while traveling) figuring out the statdose thing on her own. I feel she is growing tired of my headaches as well.
I'm loosing it! It is effecting everything I do.EVERYTHING.
I feel like I am at the end..I know there are those who have it worse..I think all the time "what if this cycle turns into "all the time" WTF will I do then"?.
I know rambling first post. pitty pot...I feel a little better.
I do know that I have a date with a demon tonight though so not that much better. Thanks for listening.
Cool Forum!
O2 did not work for me..That sucks..I feel happy for those of you who have luck with it.
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Roxy
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Re: Hi there, I'm new here and not doing so well
« Reply #1 on: Mar 29th, 2006, 11:26pm » |
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Sorry you are having a tough time. Did your neuro put you on any type of preventative, and did you or he think about a pred taper?
How did you administer the 02 when you tried it. Does exercise trigger or abort for you?
Lots of options out there...what have you tried in the past?
Roxy
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Jimi
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Re: Hi there, I'm new here and not doing so well
« Reply #2 on: Mar 29th, 2006, 11:27pm » |
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Tell me how you used the 02. How high di you have the LPM set to. It needs to be at least 10 LPM. Some need it set at 15. Did you use a mask or a nose cannula? What type of mask? 02 usually works well with episodics. But it has to be a high flow. If you do become chronic, you live with it. Thats all. But there are other drugs to try that helps those that are chronic. There are also alternative medications to try although I have not tried them. Others can tell you about that. Good Luck Kevin.
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Richr8
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Re: Hi there, I'm new here and not doing so well
« Reply #3 on: Mar 29th, 2006, 11:34pm » |
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Sorry you are hurting bud. We have all been there and i know you will make it. In the darkest hour , it is difficult to believe, but you must. You'll get through this night, and the next. Hang tough better times are ahead.
PF wishes,
rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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nani
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Re: Hi there, I'm new here and not doing so well
« Reply #4 on: Mar 29th, 2006, 11:35pm » |
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Hi Kevin. I'm pretty sure every one of us has felt like this before. Just finding this place has made a huge difference for most of us. Now that you've found us, you are also going to find the strength and determination to not only keep going...but to take your power back.
You are your own best advocate, and information is your best weapon. Read, ask questions, learn. Then go back to the dr and get on some preventatives. Come and vent when you need to...we'll listen.
pain free wishes, nani
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blossom
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Re: Hi there, I'm new here and not doing so well
« Reply #5 on: Mar 29th, 2006, 11:35pm » |
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Kevin-
First and foremost - this is the BEST place to come when you get to this point... come, byotch and let it all out, that's what this is all about.
Second, if you haven't tried the oxygen try it ASAP! Here is what you do. Call 911, the paramedics come, tell them you need oxygen thru a non rebreather mask at 15 lpm. If it works for you tell them you don't need to go the hospital and you don't get billed. Give it at least 15 minutes to work. If it works for you, get to the dr the next day for a prescription for a set-up. I work for an insurance company so if you have any problems getting the o2 PM me and I will get back to you ASAP.
Stay strong and don't get down... reach out to your wife, don't try to do this on your own. PM me and my husband if you need to talk.
Much love-
Karen
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Kevman
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Re: Hi there, I'm new here and not doing so well
« Reply #6 on: Mar 29th, 2006, 11:53pm » |
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Just comming off of the pred.. had tried it before..didnt work then either. Was up to 100 MG a day this tim for over a week I was LOOSING it!!! down to 10MG for 1 mor..good riddence(sp?) Doing topomax now at 125mg day now and veramil300mg. I do not recall the prescrep for the O2 last cycle..my biggest problem is my nasal sensitivty.
It hurts because it's cold, or "feels" cold. Even breathing through my mouth "cold" air rips through my nasal passage like a tornado of needles.
lots of steaming showers/ sinks...
Monday my neuro performed a nerve block on my occipital nerve. He is trying..Bless him..
Thanks for the responses.. I think I will try sleep tonight...After a Monster energy drink.
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Richr8
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Re: Hi there, I'm new here and not doing so well
« Reply #7 on: Mar 29th, 2006, 11:58pm » |
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on Mar 29th, 2006, 11:53pm, Kevman wrote:
Thanks for the responses.. I think I will try sleep tonight...After a Monster energy drink.
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A few folks here, including myself , have had luck with Melatonin for sleep. 6-9 miligrams seems to be the desired dose. I went form 1-2 hours of sleep to 6 plus after a few days on the Mel. Just a thought.
PF wishes,
rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Kevman
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Re: Hi there, I'm new here and not doing so well
« Reply #8 on: Mar 30th, 2006, 12:08am » |
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Thanks Richr8..Im doin 10mg of th melo a nigh per my doc already..(you should see my bag-o-drugs).I am starting to question everything though.lol nothing seems to be working..He has had me on Xanax and adavan as well to try and get me to sleep..but I think it's that I don't want to sleep....It hurts. Cover me..I'm goin' in.
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Richr8
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Re: Hi there, I'm new here and not doing so well
« Reply #9 on: Mar 30th, 2006, 12:11am » |
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on Mar 30th, 2006, 12:08am, Kevman wrote:| but I think it's that I don't want to sleep....It hurts. Cover me..I'm goin' in. |
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I have been there many times myself, but the common advice is, don't fear sleep, get what you can, when you can. the hits will come regardless. Staying awake doesn't stop them either.
Best,
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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BarbaraD
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Re: Hi there, I'm new here and not doing so well
« Reply #10 on: Mar 30th, 2006, 7:21am » |
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Take the topamax at night before bedtime. The whole dose.
That and the melatonin should help produce sleep as well as the antidepressants.
Are you using a nasal thingy on the O2? You need a non-rebreather mask.
Some here take hot showers.
Coffee or Red Bull work well at the first stage of a hit to abort (sometimes). Cold or heat (I'm a 'coldie" can't stand any type of heat when getting hit) work for some.
Try the WaterX3 on the left side of this page... it's worked for a lot of people when nothing else would.
Good luck at getting some releif.
Hugs BD
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Caine_607
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Re: Hi there, I'm new here and not doing so well
« Reply #11 on: Mar 30th, 2006, 7:52am » |
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Hey Kev,
I'm new here too and through this site I have already made a handful of people I consider to be friends regardless of whether the gesture is reciprocated... incredibly useful advice, immensely supportive encouragement, you've certainly come to the right place !
I don't suffer CH attacks quite to the extent you do but I know there are those who do and it really gives me strength to see people fight and win.. in virtual realtime !!
Please don't give up, because in my own selfish way, I need to see people like you winning in the face of overwhelming odds because if nothing else, it makes me feel special - as though I belong to a small and involuntarilly exclusive group of extraodinarilly resilient people.
One day, when all this is over (and believe me, that day will come sooner than you think I expect !), you will look back on the seemingly impossible challenge you were forced to confront and realise that you are toughest and most resilient guy you know... any other challenge in your life will pale to insignificance !
Please keep it up and keep us informed of each and every hurdle you have successfully negotiated.
Ben 
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Jasmyn
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Re: Hi there, I'm new here and not doing so well
« Reply #12 on: Mar 30th, 2006, 8:01am » |
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Welcome home Kevin.
I'm so sorry you are hurting like this. All the others gave great advise, just know you are not alone and that we understand.
Hang in there.
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Jazz 
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rickyshot
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Re: Hi there, I'm new here and not doing so well
« Reply #13 on: Mar 30th, 2006, 8:38am » |
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Read the link on O2, the mask has to be a non breather not a cannula. Also distilled water to help dryness and that cold feeling you do not like. Read the link carefully print it and go to your doc with it. I did and it works for me 70% of the time. Not bad odds. There are some days when nothing works. I know..........
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Kevman
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Re: Hi there, I'm new here and not doing so well
« Reply #14 on: Mar 30th, 2006, 9:04am » |
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Thanks everyone.
I stared at the ceiling till about 3.....Demon came and got me about 4...
Could have gotten a few nice hours of sleep in there if I would have let myself.
Had a nice little meltdown this morning with my wife who (bless her) was just trying to remind me that "you know that your cycle should be ending soon".
My problem is that I don't know if I have any faith in that.
I tell myself that every day.....and then.
I'm pretty sure that I am screwed up emotionally now at least partially from the big dosage of prednosone I just rode. I hope.
Just want my self back..I know you all can relate.
I'll check on the O2 stuff again. Thanks
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Ghost
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Re: Hi there, I'm new here and not doing so well
« Reply #15 on: Mar 30th, 2006, 9:09am » |
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Welcome to the Jungle Kev and don't get to discouraged. I keep letting the beast get me down too but thanks to a lot of great people here They pull me back up. Read the sorry thread its a great example of the cheer and support brought.
Mike
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***WARNING*** Oxygen will rust your pipes!
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sandie99
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Re: Hi there, I'm new here and not doing so well
« Reply #16 on: Mar 30th, 2006, 9:30am » |
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Kevin,
warm welcome! 
I'm so sorry to hear that the beast is hitting hard right now... 
It's important that you don't let the devil get to you mentally. It sure wants to do that. Recall, always, that you're NOT ALONE with ch. You've got lots of supporters right here. Some of them are in a cycle right now like I am, some are happily PF but still here and our supporters.
When you need to vent, when you want to share your experiences, when you just want someone to talk to, when you've trying a new med, when whatever, just come here. Your international ch family is right here when you need us.
Best wishes & PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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ClusterChuck
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Re: Hi there, I'm new here and not doing so well
« Reply #17 on: Mar 30th, 2006, 10:04am » |
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Sorry you are having it so rough. We have all been there.
I am a HUGE advocate for oxygen. It is the only thing that has kept me on the right side of the daiseys (looking down at them, not pushing them up).
Here is a link to a thread I started in the medications section. Maybe this will help: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1142748998
With oxygen, if doesn't work one time, or two times, or MANY times, keep trying it. It is relatively inexpensive, and has virtually no side effects.
The biggest factor in surviving this curse is YOU.
1. DON'T let it rule your life
2. DON'T dwell on the hits
3. DON'T rely on the doctor's knowledge to help you
4. DO dwell on, and enjoy the pain free times between hits
5. DO lean on your supporter(s) when you are feeling low
6. DO ask questions, here.
7. NEVER feel ashamed to bitch, moan, and/or cry here.
8. DO get to know people, from here, in person
9. KNOW that we all care, and are the ONLY ones that truely know what you are feeling.
10. DO enjoy life! Hard as it is, LIFE is great!
I hope this helps.
Chuck
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Dragnlance
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Re: Hi there, I'm new here and not doing so well
« Reply #18 on: Mar 30th, 2006, 11:07am » |
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Quote:The biggest factor in surviving this curse is YOU.
1. DON'T let it rule your life
2. DON'T dwell on the hits
3. DON'T rely on the doctor's knowledge to help you
4. DO dwell on, and enjoy the pain free times between hits
5. DO lean on your supporter(s) when you are feeling low
6. DO ask questions, here.
7. NEVER feel ashamed to bitch, moan, and/or cry here.
8. DO get to know people, from here, in person
9. KNOW that we all care, and are the ONLY ones that truely know what you are feeling.
10. DO enjoy life! Hard as it is, LIFE is great!
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This is Awsome advice. Follow it. I do.
My controbution is this. Try an herb called Kudzu. This has turned my life around. It has reduced the number of hits, the strength of the hits and the durations.
I am chronic, have been even longer than you, So for me to say something has made such a change, is really something.
If you try it, make certain it says "Extract" on the front label. Some brands have both extract and just kudzu root, which FOR ME, did not work very well.
I stress that because we are all different, and some things work great for some and not others.
Anyway, welcome home man
Dragn
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DonnaHar
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Re: Hi there, I'm new here and not doing so well
« Reply #19 on: Mar 30th, 2006, 1:14pm » |
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I can totally understand the inability to tolerate anything cold going up my nose during a ch. I had to put a towel around my face to re-breathe warm air......just room temp air made the headache tear a new path up the back of my nose and up my eye into my head.
I wonder how many people have a problem with cold air? I wonder if the 02 could be warmed just before it goes into the nose?
Kev.....glad you found us. You'll never find a more compassionate bunch than clusterheads........we are all in active duty or veterans of the same battle here.
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alchemy
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Re: Hi there, I'm new here and not doing so well
« Reply #20 on: Mar 30th, 2006, 7:27pm » |
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hey kevin, i've been on the pred iv and taper. it takes you for an emotional ride from hell. ride it out it will get better. hang in there its all we can do. the people here are awesome so you're never alone jim
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Jonny
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Re: Hi there, I'm new here and not doing so well
« Reply #21 on: Mar 30th, 2006, 7:39pm » |
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on Mar 29th, 2006, 11:53pm, Kevman wrote:| I think I will try sleep tonight...After a Monster energy drink. |
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on Mar 30th, 2006, 9:04am, Kevman wrote:Thanks everyone.
I stared at the ceiling till about 3.... |
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I may be wrong, but drinking a can of sugar might keep you up at night.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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TxBasslady
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Re: Hi there, I'm new here and not doing so well
« Reply #22 on: Mar 30th, 2006, 10:57pm » |
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I've always thought I was a pretty tough broad. Not much I couldn't do....and I feared nothing.
When I was diagnosed with CH, I was in a horrible cycle. For the first time in my life, I was afraid. Afraid I was gonna die.....and afraid that I wouldn't. As time went by I was afraid to go to sleep...I refused to go to bed. I could literally stay up and awake for 3 days. The bad thing about that was when I did go to sleep, the beast would beat the shit outta me.
I slept on the sofa propped up on pillows close to a year. Melatonin helped me for a while...gave me lots of pf nights. Prednisone tapers gave me more pf time than anything else I had used. When the melatonin quit working, I tried the Kudzu. I stayed on the Kudzu for 10 months and when the CH started ramping again, I got the o2. I tapered off the Kudzu in December, and use nothing now but the o2. The o2 is like a miracle for me. I haven't had a ch since January 26th. Four or 5 shadows in the last ten days....but basically painfree.
CH is tough to deal with, there's no argument there. I do think that support helps us make it through the bad times. Being in the company of another who suffers is the ultimate.
I don't know where you live...but I would like to encourage you to find someone here on the board who lives relatively close to you. Get together with them and I promise that you'll never regret it. I truly believe it's the best medicine. Sometimes we're overwhelmed with the pain, frustration and lack of sleep when we're in cycle. Sometimes we just need someone to talk too.
I sure hope things get better for you. Stay in touch and let us know how you're doing.
Lots of pf vibes headed your way..
Jean
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Charlie
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Re: Hi there, I'm new here and not doing so well
« Reply #23 on: Mar 31st, 2006, 6:33pm » |
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Welcome Kevin.
Sorry you have to deal with this horror. We've all been there or still are there. I've been pain free for almost 14 years. I'll be 60 this year and there are some that believe that age is a factor. I can't prove it though. I was 23 when they began and 45 when they ended. I don't know why. The only "new" thing was that I began to drink gallons of very very strong coffee.
The only drug I used was Inderal as an abortive that for me, was successful within a week or ten days. It didn't kill them but it gave the beast a run for his money.
I did use a technique that worked at least 65% of the time in aborting or considerably shortening the attacks.
Here it is:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Kevman
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Re: Hi there, I'm new here and not doing so well
« Reply #24 on: Mar 31st, 2006, 9:38pm » |
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wow..You guys rock....
I have not had much to smile about lately..
Quite literally loosing my mind here..Last posted here around 9 on thursday morn. Have not slept since about 4 thursday morn. I know.......I have to sleep.
The beast is hitting me about every 8 hours give or take but lots of the time i have the shadow living right there behind me...Makes it hard to do anything but ..well you know...
My wife (bless her) works at the same hospital my neuro does and spoke with him today.
I am having emotional meltdowns ALL the time. i cry half way through the most simple conversations finding a way to turn it around about my condition.
I can't complete thoughts,tasks, pretty much anything.
I've lost about 18-20 pounds in the last 3 weeks. granted a good bit of that is probably water weight from the prednosone but, i am not feeling real healthy.
Doc says " I thinks this condition" the mental one " is chemical, caused by a negative reaction to the Topomax doseage increases....tell him to stop all Topomax NOW!!!"
WTF!
he has been increasing me on that med for weeks (along with the pred) All along when he asked me how i doing I'd tell him about my increasing anxiaty (mostly about running out of Imitrex) but he said this was to be expected...
I'm freakin' again. still.
My confidence level in a guy I need confidence in is wavering big time.
I am scheduled to speak with the good doc tomorrow..he calls me on the weekends..i know he's a good guy..just questioning his treatment of my tender ass mellon.
Today was a M-er F-er...4 am..9(this one took 2 injections a 1/2 hour apart)..3..Last shot.. left work early right after the shot to fight traffic (north Jersey to the Jersey Shore on a sunny Friday) you guessed it..the 3-oclock beast never really went away..just kinda tucked back behind my eye and waited for the Garden State Parkway to clog up good... Had to find an Emergency room....got home at 9.
Every day is like Disney.
Cycle will end soon.....i can get through this.....I will get some sleep....I will try to eat....am going to bring up O2 and kudzu with Dr. tomorrow.
anything else i need to add to my list. I have to make them or it all gets flushed now.
Bumper to bumper
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