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Topic: Need to have someone to talk with... (Read 1265 times) |
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cynner68
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Re: Need to have someone to talk with...
« Reply #25 on: Feb 5th, 2006, 6:04pm » |
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LOL, yeah, I plan on calling tomorrow. Gotta be careful, tho. You say the "S" word too loud here, and they put you in the hospital (and I don't mean the medical one!) to protect you from yourself! Believe me, I Know!  (Long story, I'll save you the details here...)
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shenke
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Re: Need to have someone to talk with...
« Reply #26 on: Feb 5th, 2006, 9:49pm » |
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I'm now on day 16 of staight attacks. Haven't sleep more than 3 - 4 hours each night. Too scared. See thats when my attacks occur, only when I go to sleep. My doc put me on prednisone for 7 days ..got to where I only had one CH a night, not so bad, I guess. Then, day 8.. 3 CH through the night... I was in hell... Husband not real helpful. Was also taking topamax and it's making me crazy. Numb, tingly, shaky, confussed.. Now he has added lithium. Left house for the weekend, to get away. Needed time.
My boss loaned me his computer, this is my saving grace and everyone here. I don't know what I would have done without this support. Have a great friend at work also. 2 attacks a night now.
Feels like someone has cut my brain open and poured salt in it. Then...cut it up with a razor...oh like yall really need that right!!!! Try to stay awake so the beast won't return. I know now what hell must fell like.. Some nights I sit here and fell sorry for myself and wonder how many more days I can take of this. Then I read others stories...sometimes I cry, and sometime you guys even manage to make me laugh. I don't know how, but yall do. I just love yall.
I've been to the chat room too, no complaints from me here....just wish I would have found it sooner!
AKA SAH while in chat
PS Do you know how many typos I had to correct,meds ....YUCK 
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shenke
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Re: Need to have someone to talk with...
« Reply #27 on: Feb 5th, 2006, 10:00pm » |
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Well, that was rude of me,didnt even say hi to cynner68, WELCOME  This place is great!!
Sheila
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Dragnlance
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Re: Need to have someone to talk with...
« Reply #28 on: Feb 6th, 2006, 8:35am » |
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Hi Sheila,
I understand the feeling about the drugs. I was on 4 different ones at one time, and I quit taking them 3 years ago. Quite honestly, I didnt see any help other than to fog out my brain. I hated not being able to think. I also understand the fear of sleep. Yesterday, the monster clawed my brains for 9 straight hours. I showed my wife this website, and after just a couple moments of reading the front page, she looked up, wide eyed and exclaimed, "thats you, they are describing what you are going thru.." Maybe show your husband Simon's letter, or even just the front page of CH.com.
Some things that I do to help, is a really hot shower, usually as hot as I can stand. An herb tea called "ThinkO2". Atomic Fireballs can sometimes distract, just a little.
Oxygen is reguarded as one of the best treatments, but does not always work. For me, when I could afford it, (I have always stated that my pain scale went to 14) I had to be over pain level 8 to get any benefit. (usually it reduced the pain by half).
It is amazing to me, the people that are here at this website. Like you, I wish I would have found this sooner.
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BobG
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Re: Need to have someone to talk with...
« Reply #29 on: Feb 6th, 2006, 12:31pm » |
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Hey Sheila,
That topamax seems to make everyone nuts. Will your doc change you to something else? Verapimil might be a good choice with or without lithium. But, don’t go by what I say, I’m not a doctor.
Sheila and Lance,
To help get thru the night a lot of folks are taking Benedryl (sp?) or melatonin. It keeps you from entering the REM sleep mode where the devil lives.
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Stay stressed. Never relax. Never sleep. Ever.
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Richr8
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Topamax..
« Reply #30 on: Feb 6th, 2006, 1:04pm » |
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..I am coming off cycle right now and in the throws of Topamax. I am a mental wreck. I've convinced my Neuro to take me off, but she doesn't want to start weening me off of the Top until my Pred taper is done. Some of the symptoms I am experiencing are: Listlessness, confusion, inability to focus, cognitive difficulties, somnulence, staggering gait, depression, uselessness, etc. I realize some of these are, or could, be attributable to the long period of sleep dep I am recovering from and general inactivity, but I have been sleeping for a few days now and these things are persisting, so i suspect that these side effects are directly linked to the Top. Anyway, those are my observations so far.
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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imnotbub
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Re: Need to have someone to talk with...
« Reply #31 on: Feb 6th, 2006, 3:22pm » |
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I used to be afraid to sleep myself. You have to sometime, so you might as well try. When 'he' comes, 'he' comes. Any little bit of sleep you can steal you should. At least that's my 
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Life may not be good, but I think it beats the alternative, and if it doesn't, we'll find out soon enough
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FramCire
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Re: Need to have someone to talk with...
« Reply #32 on: Feb 6th, 2006, 4:27pm » |
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Sorry to hear your experience. I know what you are going through. This cycle I was having HAs at 6pm, 10pm, and 1 AM. Each one was lasting almost 2 hours and I had the wrong O2 mask so it wasn't working. I couldn't fall asleep until my 1AM HA went away and that would put me to sleep around 3:15am give or take 20 minutes. Then I'd wake up when my kids woke up (6am-7am) and that was my sleep schedule for a LONG time.
now Im on 480 mg of Verapomil (2x240) and 9 mg of Melatonin, along with O2. I have been able to sleep from 12:30am (or so) until 5 am (Id just wake up, no HA) and then fall asleep again until the kids woke up.
Anyway, it CAN get better even while in cycle! Keep your spirits as high as possible and I would call the new Nuero every day (or other day) and ask about filling a cancelation. I got in with the HA specialist I saw the same day I was reffered because of a cancellation. (this is a very good thing to do with any Dr you can't get an appointment to see - people cancel almost every day, if you hit the timing right, you can fill that spot.).
Anyway, my prayers are with you for PF years ahead!
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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cynner68
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Re: Need to have someone to talk with...
« Reply #33 on: Feb 6th, 2006, 4:42pm » |
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Hello again! Thank you all for the warm welcome and support and suggestions!
Some good news to report. My hubby is a recently retired paramedic, and after I read him some of the info here about O2 use, we went digging in the closet, and, sure enough, a full tank of 02 and a 15lpm valve and a mask! HAPPY HAPPY! I have new armor for my next battle with dragon!
(The Dragon in Mommy's Head is what my 6y.o. calls the HAs.  ) Wasn't able to get a new appt. with my neuro today, but I am gonna try tomorrow. Definitely gonna ask to get off the Dopamax... Taken Benadryl the last 2 nights and finally gotten some blessed sleep! 2 whole days PF!
So very sorry to hear about others who are in their personal hell at the moment...hold on to the knowledge that even a dragon as big and bad as ours will get tired and nap eventually...Till then, we'll keep looking for better weapons and armor!
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FramCire
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Re: Need to have someone to talk with...
« Reply #34 on: Feb 6th, 2006, 7:18pm » |
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cynner: Make sure the mask is a non-rebreather. (SEE LINK TO THE LEFT). I had the other mask at first and it didn't work very well. The right mask and O2 makes a HUGE difference.
E-Double has the link but there is an awesome article you should print out before you go to any doctor for your CH. I read it and my HAs have been much better on Verapomil and Melatonin. (***anyone that has the link please copy on this thread***).
Congrats on 2 days PF. May the 2 days become 2 years and then another 2 years...........etc.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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shenke
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Re: Need to have someone to talk with...
« Reply #35 on: Feb 6th, 2006, 8:53pm » |
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Hi again everyone...back home now. Went to the doctor today and my husband went with me. It was a very emotional time. He took me off the topamax, still taking the lithium..last night was PF, kind of...slept for the first time for 4 1/2 hours, woke up at 4 am & felt nothing, sat up in bed and cried. Couldn't believe the beast didn't wake me. Then about 4:30 I felt it, did a imitrex inj.(use the imitrex tip on the left... only 1/2 of the injection) and it never escalated...I am so thankful.
I think about everyone here throughout the day and night. I am hopeful once again and know I will start feeling better once these meds wear off.
If means so much to come back and see that someone cares. Thanks once again.
PS Husband is pulling through, rreally new he would.
Sheila
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FramCire
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Re: Need to have someone to talk with...
« Reply #36 on: Feb 6th, 2006, 9:51pm » |
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Thats AWESOME!!! A PF night is sooooo nice. Also, it is great to have a spouce that can be there for you.
Congrats!
Your doctor took you off of Topomax, are you tapering off or were you at 25mg/day? I was told to taper off (100mg a day down to 50 to 25)
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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shenke
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Re: Need to have someone to talk with...
« Reply #37 on: Feb 7th, 2006, 8:13pm » |
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Yes, I did taper off to 50mg, 25 mg tonight, then none tomorrow. And my PF nights didn't last long, had two CH attacks last night  , Just on lithium now, 300 mg every 8 hours. Day 20 with so little sleep.
Some days I don't know how much more I can take. I get so tired, but don't want to go to sleep.
I come here to visit though and always feel better.
Thanks for your replies.
Sheila 
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FramCire
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Re: Need to have someone to talk with...
« Reply #38 on: Feb 7th, 2006, 10:03pm » |
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I'm glad he took you off of Topomax before you hit 100mg per day. I don't think I have recovered yet from it.
I reread the thread and you didn't mention O2. Do you have it and if not GET IT! Have you tried a high dose of Melatonin?
YOU WILL MAKE IT THROUGH THIS. Your body will adapt to the lack of sleep (mine has). I know it is tough to believe, but you will make it through it and more PF days are ahead.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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imnotbub
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Re: Need to have someone to talk with...
« Reply #39 on: Feb 8th, 2006, 3:50pm » |
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Just let me repeat. Sleep when you can. Even an hour is better than none. I had one cycle go 8 weeks or so and I tried to avoid going to sleep in the beginning. I still battled and was even more tired. Try sleeping sitting up, it reduced the severity of the attacks for me.
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Life may not be good, but I think it beats the alternative, and if it doesn't, we'll find out soon enough
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Dragnlance
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Re: Need to have someone to talk with...
« Reply #40 on: Feb 8th, 2006, 4:30pm » |
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Benedryl works too. Everyone is correct, and as a chronic, I can swear to it, grab sleep when you can, even if it is 1 1/2 hours here, 2 there, get it.
YOU WILL MAKE IT. We are HERE for YOU. We know what it is!! Trust us. You will Survive!!!!
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djpaynesr
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Re: Need to have someone to talk with...
« Reply #41 on: Feb 8th, 2006, 9:29pm » |
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Hiya everyone 
I'm new here too. I've been dealing with the Beast for 15 years though. I am lucky enough to have the VA pay for my oxygen for 5 years so I've had plenty of time to experiment. 
The best thing I've found to do is on one side of the mask there is a hole covered by a flexible disk to make it a one-way valve. The other side doesn't have a disk. I've taken a disk from another mask and covered the hole that was open. This makes sure that I get 100% oxygen. With a really bad one it takes about 15-20 minutes to get any relief and 30 minutes for full relief.
I generally take Trex (when I have it) and then take O2 until the Trex kicks in 5-7 minutes. This takes the edge off and keeps the Beast from getting any worse until the Trex kicks in.
Last year I was in the middle of a horrible episode. I went from 1 yr. PF to 5-6 attacks a day within a week. I was caught completely unprepared. I ended up spending a week in the hospital while my MD put me on IV 'roids. I was an absolute mess. (While I was there I had a nurse try to stop my from turning my O2 up to 15 l./ min. That is how unprepared the medical community is for these things.) Anyway, that is when I learned about DHE or dihydroergotamine. This works like Trex but it's not as harsh. It's also a generic, although a very expensive generic, so some insurance companies may tolerate it better than Trex.
Cynn, nice to meet you. I wish it was under better circumstances You'll get through this. Together we will all help each other.
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We can survive this
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djpaynesr
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Re: Need to have someone to talk with...
« Reply #42 on: Feb 8th, 2006, 9:37pm » |
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One last thing, Ambien, Ambien, Ambien. Especially if you have an abortive.
Take the Ambien, go to sleep, wake up, take the abortive and go back to sleep. Works great for me.
I know I probably don't have to say this because of the Beast but I'll say it anyway:
DO NOT DRINK AND TAKE AMBIEN You will have animated and highly functional sleepwalking episodes. I don't and have never had a problem with sleepwalking. Drank one beer and took an Ambien and almost burned my house down and don't remember a darn thing.
There are stories on the 'net about other people that have taken it after drinking, actually driving their car and not remembering.
That aside, Ambien does work wonders for me.
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We can survive this
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shenke
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Re: Need to have someone to talk with...
« Reply #43 on: Feb 11th, 2006, 10:08am » |
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Hey again everyone -
Went back to the Dr. Fiday.. he left me on my lithium, and added verapamil (120 mg every 8 hours).
I asked him about the melatonin...he wrote a Rx for sonata ( has fast onset, but short duration )
What do yall think??
I have to get up early for work -so he thought this might help relax me to go to bed.
I asked about oxygen, he said if imitrex works keep taking it.
I do have residual pain afterward though or "shadows" throught the day...asked if I could take excredrin migraine - he said ok.
Wants to give these meds another week or two and if cycle doesn't break, he will call a neurologist.
This is day 23, want to go back to the hotel. Don't want to be a wife or a mom right now. Function ok during the day at work because I can stay so busy. (esp since I'm off the topamax - which made me insane & stupid)
Just want this to be over.
Sheila
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E-Double
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Re: Need to have someone to talk with...
« Reply #44 on: Feb 11th, 2006, 10:34am » |
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Go with the melatonin!!!!!!!
No script necessary.
As far as sleep meds go that are supposed to be good.
I was perscribed Roserem yet never filled it.
Go with melatonin!
Why wake up and abort if you can prevent 
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Richr8
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Another vote for Melatonin.
« Reply #45 on: Feb 11th, 2006, 10:46am » |
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I had huge sleep issue while on my Prednisone taper and tried many prescription sleep aids including: lerazpam, temazipam, lunesta, and ambien, none worked. After just two days on 6mg of Melatonin I was getting 6 hrs a night. My Neuro ok'd the melatonin and the Excedrin migraine which worked for me on persistent shadows. A caution on any OTC meds though, be careful as overuse can lead to rebound headaches and other health issues as infdicated in the side effects.
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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cynner68
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Re: Need to have someone to talk with...
« Reply #46 on: Feb 12th, 2006, 10:59am » |
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Hello again...
Just wanted to say thank you once again!
Thought this cycle was over, actually had 4 PFD, I was dancin' in the streets! But, alas, the dragon was only on a coffee break...He came back with a vengeance and here we go again.
Based on my reading here, I went out and got some melatonin. Sleep~ What a glorious thing! Getting about 6 hours of peace before the dragon nudges me awake the past three days, but I'll take all I can get.
Got the 02 working today. After about 10 mins, I felt human again. Amazing is all I can say! I never woulda' known had I not crawled in here a couple weeks ago. This may be the life-saver I have been searching for. One can only hope.
Got a new appt. with my neuro. Going tomorrow- armed with a list of questions and requests. You all have given me so much info and I am soooooo grateful. I can go into this appt. with some hope that things might change. I am sick and tired of feeling like a damned dyslexic, feeble-minded zombie! I am getting off the Topamax (100mg/day currently) and am gonna DEMAND a script for 02, and a change in meds. I've been doing things HER way for a year and it ain't workin'. Time to change attacks.
Seems there is more valid, useful info here than in her office. I shall do my best to impart some of your wisdom upon her.
Or I will find someone new.
Wish me luck!
PS. Any suggestions on specific things to tell/ask her?  I am open to any and all thoughts and ideas.
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Richr8
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Re: Need to have someone to talk with...
« Reply #47 on: Feb 12th, 2006, 11:28am » |
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on Feb 12th, 2006, 10:59am, cynner68 wrote:Hello again...
I am sick and tired of feeling like a damned dyslexic, feeble-minded zombie! I am getting off the Topamax (100mg/day currently) and am gonna DEMAND a script for 02, and a change in meds. I've been doing things HER way for a year and it ain't workin'.
PS. Any suggestions on specific things to tell/ask her? I am open to any and all thoughts and ideas.
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Topamax did not work for me either . Some of the things I experienced are listed here: Listlessness, confusion, inability to focus, cognitive difficulties, somnulence, staggering gait, depression, uselessness, etc. I realize some of these are, or could, be attributable to the long period of sleep dep I am recovering from and general inactivity, but I have been sleeping for a few days now and these things are persisting, so i suspect that these side effects are directly linked to the Top. Anyway, those are my observations so far. I definitely will not be trying Topamax again.
And go for the O2! It's my primary abortive.
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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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cynner68
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Re: Need to have someone to talk with...
« Reply #48 on: Feb 13th, 2006, 11:17pm » |
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Got to see my neuro today. Sort of a Good News-Potentially Bad News thing...
Good news is she understood and agreed that the Topamax needs to stop. I have been off it for 3 days now (scrip was due to refill, but I opted not to, since I wanted off it anyway). Didn't hurt my arguments any when I kept tripping over words, couldn't remember Dr.s name & had a mild CH hit while I was talking with her. Didn't take her long to reach for the Rx pad and change my meds. On the advice of many here, I asked about Verapamil and she did prescribe for it. She also gave me a scrip for O2!
The bad news in this visit was that it was immediately followed by yet another MRI. I've been having some pretty intense and troubling episodes of numbness and confusion, etc. with this recent bout of HAs. She is very concerned that I may have had-be in danger of having TIAs &/or a stroke. If that's the case, of course, all the triptans will be out of the question for me -for good.  So next step is blood work to test for all kinds of stuff and waiting on results of all these tests. I hate the waiting.
So here I sit, scared to death while trying to "stay calm and avoid unnecessary stress".... Yeah, right!
I know I am new here, and relatively unknown, but I hope that you, fellow victims of the Dragon, can find it in your hearts to take just a moment of your PF time to think a good thought for me. I need all the positive energy I can get right now.
And now, I am going to grab some melatonin and a big glass of water and crawl into bed and hope I have a sleep-filled but dreamless night. The waiting can wait- I'm tired...
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FramCire
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Re: Need to have someone to talk with...
« Reply #49 on: Feb 14th, 2006, 12:01am » |
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CYNNER: I just said a prayer for you and I will try to remember to keep praying for you.
I do have 1 question. I was told to taper off of Topomax from 100mg to 50 mg to 25mg to 0mg (each step for 1 week). I wonder if the quick stoppage could cause you problems. I am not a doctor, so I don't know what the reason is for a taper.
Also, I have only used triptans 2 times over the last 4 weeks or so, and I only did it to try and sleep a few more hours (they didn't work anyway). Fighting the beast can be done without triptans, so if you can't, don't fret. There are still other things you can try.
With Verapomil...... it didn't have much effect for me until I upped the dose (with my doctors consent) to 480 mg (2x240), If your dose is smaller and it isn't working after a while, talk to your doctor about upping the dose.
With all of this said, I'll pray for you PF or not. Your situation is too important to wait for some PF moments to say a prayer. If there is anything you need (especially in the prayer department) please shoot me a PM (or on this thread). I also have a medical advisor I can bounce questions off of if you need.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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