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Author
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Topic: topomax and irritability
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missy
Member
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posted 22 February 2006 09:02 PM
   
Here! Here! RJ  I'm hanging on to that hope as well. I've been out of it for the past few days...blood pressure shot out of the sky and I had to be admitted for observation...hubby is flying home....had to cut his conference/training short. So, yes Princess you are right, we do need to sit on the cough and take care of ourselves. I guess I was just pushing myself too much...and even though I kept telling myself that I had to keep going because of everything going on in my life, my body just wouldn't hear of it. I know that migraines dosen't pick and choose who it wants to attack. It isn't fair that we are all suffering from this terrible illness. None of us deserves this and like RJ, I too will not ever allow a doctor who to tell me to "accept" what is happening. This is not a life happening experience. It is not normal and we all deserve better than this. I pray it comes VERY SOON for all of us. Take care everyone. Aloha,
Missy IP: Logged |
Princessdinkydi
Member
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posted 22 February 2006 09:32 PM
Missy,I am sorry that you had a scare like that.
I'm also sorry that you had to stay in the dang hosptial. Guess you got some rest though huh
(Just trying to put a positive spin on it) I am always concerned when things get out of hand.
Myself I almost hit a child one day with my car...."pushing' it with a Migraine. Later that night they told me I almost had a stroke in the ER. I know you've probably heard that one recently as well. Cross your fingers guys,
tomorrow I see my doc..... IP: Logged |
gmaxcook
Member
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posted 23 February 2006 06:56 AM
Thanks RJ for your thoughts.
Sorry Princess..I was kinda out there on a tangent.. you are right about weekends! For SURE!
Debbie..Please hang in there, everything happens for a reason. This actually could be the best for you, you'll see. You are in my thoughts.
Something must be in the atmosphere, everyone is having a bad patch, after having weeks or months of good relief from Topa, its crazy. We must stumble on.
SheilaIP: Logged |
gmaxcook
Member
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posted 23 February 2006 07:00 AM
Missy,
Didnt mean to miss you... I think I missed your post all together! You, too, hang in there kiddo. I'll be thinking of you as well. Hang in with all you got!
SheilaIP: Logged |
LP
Member
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posted 23 February 2006 08:43 AM
RJ,
What I do have is an acceptance of my disease and a peace with where I am in my life. I have an excellent neurologist. He has never said to "just deal with this". He is upfront with me with what is available today. He is always searching for new treatments, looking at current research, looking at FDA trials, looking at new meds coming up for approval, and willing to try new treatments. He does try to help me with what is available NOW, so that I can learn to get on with my life. I need to figure out how I can go to work tomorrow, take care of my autistic son, go to my daughter's recital, go to a birthday party, etc. I have to figure out how to ACCEPT what I have now to continue on with life. I am always hoping and knowing that there will be advances in our medications. I am confident that we will have more successes. I have to hold on to that hope, or there will be no hope for my nine year old daughter who is beginning the same pattern. Acceptance is also knowing that God is in control. I am at peace with what He has given me and know that it is in His plan. It has been difficult for me to have a life time of headaches but He will carry me through no matter what trials I go through. I pray daily to be healed and for all of you.
Lydia IP: Logged |
missy
Member
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posted 23 February 2006 02:16 PM
God bless you Lydia. I thank you for your prayers and I thank you for sharing. What you shared is so true...I know...and it is too easy to forget it sometimes...thanks for the reminder Princess, you mentioned that you almost had a stroke when you were driving...do you have high blood pressure too? That sounded so scary. Are you ok now? I hope so hon. My incident happened when I was at home (thank God), but I did have a moment when I was driving and for just like a blink of a moment, I didn't know where I was. Did you ever experience this? Anyone? It was really strange. Maybe this was a topa moment. I don't know..but, I just didn't know where I was or where I was going...then boom..the feeling went away. I'm scared that this may happen again when I drive, and if it lasts longer, I may get in an accident. Anyone ever get this from their topamax? Sheila, thanks also for your prayers. I appreciate them so very much. Debbie, I am new to the board and just heard of your situation and I am just so sorry to hear about all that you are going through. I hope you get all the legal support that you are entitled to. RJ gave some GREAT advice and I know that you will come out of this one since it is so obvious that you are being discriminated against. I'll be praying for you. Take care everyone...and by the way...anyone seen the Llama? Maybe someone should lend him to Debbie's employers who are treating her so terribly. What do you guys think? (giggle) LOL Missy IP: Logged |
Shannon
Member
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posted 23 February 2006 02:43 PM
Lydia,
Thanks for the reminders. Truly. I wasn't looking for a cure in Topa. Just a little more hope for longer relief. Just a hope for a few more days in between Imitrex days where I am slogging through. Just a few more days of feeling really good. There just aren't that many in a week. Like I said, I am in constant management mode. People all around me seem normal and I don't feel like them. I am tingling in my hands, forgetting a name, or popping an Imitrex because my head is going to explode and I have to work in my daughter's classroom. (And she had a migraine last week and threw up 15 times in a few hours. Lovely.)But I actually give talks to church groups about how God is in control. Shame on me for not remembering that in my own life. But God being in control doesn't mean we can't still say "This is hard!" and search for answers to the problems. I was hoping Topa was one of those answers. I think I will try harder to get better sleep and more exercise, eat more regularly and just deal the hand I have been dealt. My dad says he does not remember a day in his 30's without a headache and my grandpa lost several jobs due to migraines. At least we have the triptans now. They didn't back then--just aspirin. So thanks for the reminders that we all have to deal migraines no matter what and nothing can cure it. Some people just seem to go on this drug and have the headaches go away so quickly. I guess I am not one of those people. So I will get on with it and figure out where to go from here... But about that migraine mansion, RJ...I'm going back to playing Powerball this week. sounds like we all need it about now. Shannon IP: Logged |
Princessdinkydi
Member
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posted 23 February 2006 04:35 PM
Hey everyone.Back from Doc.
Hmmm.
Lost 14 lbs since last visit.
He doesn't know what to do.
He's put a call into my Toxocologist and my Neurologist. I think I'm looking at a hosptial stay 
Got some good news though I think....
Recieved a phone call from Ex's wife last night.
Apparently my Ex's mother recieved his court order's mailed to her by accident.
When she got them she was HOT, and called her son.
Now he apparently wants to sign and not go to court. I haven't spoken to him directly yet to see it this is really the case or not.  (his mother has cancer)
---Hey Shelia, no worries girl...sometimes it's a little hard to decifer what we really mean over the 'net.
IP: Logged |
kimberly
unregistered
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posted 23 February 2006 07:28 PM
Hi Everyone,My brain seems to be all over the place...Reading these posts...I'm so sorry that you all are having such troubles. Seems to be no accounting for it. Today is my birthday. I'll not tell you how old I am (ha-ha). Gotta tell you, I feel about eighty. Yesterday I saw an orthopaedic doc; on top of the fibromyalgia I have carpal tunnel syndrome in both wrists. That is why I don't post often. Too painful. The topomax isn't even addressing the fibro pain, let alone this awful pain in my hands, wrists, neck and shoulders. The doc prescribed Lyrica, but the side effects are as bad as Topo, and as cognitively debilitating. For a couple of nights I thought maybe the Topo was starting to work. No. Last week I was supposed to titrate to 75mg., but got confused and increased to 100 instead. Just as well I did. My thoughts are all over the place. In a couple of weeks I go for nerve conduction studies. I am so tired from the pain, tired from the drugs (not just fibro--bipolar stuff), tired of being scared about losing my job. Hey, not looking for comfort or hand holding. We're all in the same boat with our pain. I appreciate you guys letting me be a baby for a few minutes and venting. God bless you all. I'll say a prayer for each of you tonight. IP: Logged |
kimberly
unregistered
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posted 23 February 2006 09:14 PM
Hey Princess,Please forgive my being dumb, but your ex not wanting to go to court is good news...yes? (I had to read your post three times to comprehend it. Sorry.)
IP: Logged |
kimberly
unregistered
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posted 23 February 2006 09:30 PM
Sheila....Don't tell me you didn't have a long holiday weekend! What about Presidents' Day? All schools were closed for that one, quite happily it seems. I'd had no objections of my own either, for that matter. Spent it quite peaceably and industriously, typing up assessment reports. So, what did the rest of you do? IP: Logged |
missy
Member
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posted 23 February 2006 10:13 PM
Hi everyone!Princess...just emailed you and posted you on your other site. I'm so sorry to hear that you might have to go into the hospital. Is this going to be anytime soon? How many pounds have you lost in total since being on topa? I lost about 33lbs. in about 3mos., but I can afford to lose the weight. I'm sure that's not the case with you. My prayers are with you ok? Please be assured of this. HAPPY BIRTHDAY TO YOU!! HAPPY BIRTHDAY TO YOU!! Happy birthday Kimberly I'm pretty new to the boards, but I wanted to wish you a good one. I guess a great birthday would be one that is headache free right? That is my wish for you. Kim, I too have carpal tunnel but in my right arm only since it is my dominant hand. The side effect of the topamax makes my fingers numb so it kind of made the diagnosis hard at first till they did a muscle test. My nerves were too numb to tell anything. Was this the same for you? Do you need surgery at all? I hope not. I'll keep you in my prayers. Take care everyone. Hanging in there.... Missy IP: Logged |
kimberly
unregistered
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posted 24 February 2006 07:36 AM
Hi Missy,Thanks so much for the birthday greetings. I did have a headache yesterday, but it was only a minor one so I cannot complain! It was the other pain getting me down, causing meto despair. But I did have a pleasant birthday--quite the opposite of what I'd expected. I'd told my family to kind of lay low, give me space--no cake, visits, cards. I wanted to write some reports and go to bed. My niece wouldn't let me get away with it. Last night, she and the kids came over with cards and a cake. It was a nice visit. I have a wrist brace for each arm. Nerve conduction studies scheduled for March 8th. Don't know yet about surgery. Hope not. Thank-you for your prayers and for caring, Missy. Hope all is well with you and that you're having a comfortable day. Must go to work now. Kimberly IP: Logged |
maxipoo2
unregistered
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posted 24 February 2006 11:58 AM
I have been on 2oo mg. of topomax for the past year or so....How long do you usually stay on this drug?...and I am out of my prescription and can't see my doc till March and they won't write me a new one without seeing her....Isn't it dangerous to go off cold turkey??IP: Logged |
Princessdinkydi
Member
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posted 24 February 2006 02:33 PM
Maxi:YES!!! IT is DANGEROUS!!!!!!!!!! Call a pharmasist to find out everything,
but most of all siezures. IP: Logged |
RJ
Member
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posted 24 February 2006 03:21 PM
Hola Amigas!I think we missed some people on the board -newbies! WELCOME COOKIEB and MWALCH (Mary). This is a great place to be! Mary - No, I haven't heard of the lightheadedness coming off. But - I have heard of Wellbutrin causing that type of side effect. How are you doing? CookieB - How are you doing?
Next very important thing- LP when I read your post, I felt sad. I didn't mean to upset you, I believe maybe I did. An apology from my end, if so. You are 100% right about accepting the neurological disorder of Migraine Disease. I want all of us here - for whatever reason it is - Carpel Tunnel, Seizure, Migraine, Hypertension - I want there to be more answers and for all of us and to have better management and the best quality life that we can.
Missy- I am sorry to hear about your BP, but I am glad to hear that you are doing better. We need to name the Llama still. Any ideas?  We should name it for Spacey before she gets back, since she originally cast the spell on Princess' Ex! Has anyone heard word on Spacey? Is she OK? Princess - Kick Heine news on the ex's mom getting the mail. See - everything happens for a reason - and I am a FIRM believer in that! However, I pray you don't have a hospital stay. Kimberly - Happy belated birthday~! I hope that they find something to help soon. Shannon - I am playing power ball tonight. The board is great - but we really need that migraine mansion (Pg.10) and the Charter Jet. Spend some time chatting over decaf coffee about all these things...... When I win (BIG) - the whole thing is on me. Promised. - Oh yea ... I am adding a LLama to the back yard. Hope everyone is feeling better today than yesterday,
RJ
IP: Logged |
LP
Member
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posted 24 February 2006 06:45 PM
No problemIP: Logged |
gmaxcook
Member
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posted 24 February 2006 11:25 PM
Jeepers...you skip out for a few days and you miss out on ALOT around here! Nope, Kimberly, I didnt get a long holiday weekend, I worked presidents day. I'm just finishing up my month, so I'll get to take the next week pretty easy, thank goodness. I had the strangest thing happen two days ago, I'm almost embarrassed to tell you about it, but I will to see if anyone else has felt similarly. I was on about the 4th day of headache, which was VERY disheartening, since the Topa had been working so well for the last few months for me (I'm at 200mg daily) and it just seemed to quit working. It seemed like the headaches were back, I was driving back home from working (I drive about 1500-2000 miles per month)I had stopped by a flea market and purchased a small heavy brass horse statue and had it in my hand ( I like the feel of the cold brass in my hand). At the moment I realized the topamax wasnt working anymore and my headaches had returned like normal I had the impulse to throw the statue threw the window. I could visually see it crashing thru the window. I was in tears. I really wanted to do it. It gets worse. Within moments I met a semi, and I briefly thought of crossing the center line. That is not me. I do not know who was in that car thinking like that or why and thank goodness it lasted only seconds. Have you ever experienced thoughts like that with Topamax? Can you imagine someone acting on them? My little episode was over in a few moments. If this ever happens again, Topamax is OVER for me! I'd like your input. Sheila
IP: Logged |
DebbieWest
Member
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posted 25 February 2006 07:02 AM
Sheila,I used to have that alot, i was driving home once and went into a trance and just thought lets just drive of the road, the thought came to me quite calmly, obviously i didn't do it but it was things like that or wanting to shout or slap someone i really would feel like someone was willing me to do it. It was crazy... on top of all the other side effects i'm now coming of topamax. Good luck.... :-) I can kinda laugh now but at the time it was really scary! Debbie IP: Logged |
DebbieWest
Member
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posted 25 February 2006 07:12 AM
Princess, RJ and everyone who has shown me such kindness... here is an update...I'm going to get some legal advice next week i have an appointment on wednesday.. but i spoke to the OH Doctor who reviewed me for work and he is horrified by what they have done but he has warned me that (off the record) they have covered all angles so he didn't hold must hope for me.. he has said he will provide any info i need if it helps. I've got a double appt booked to see my doctor weds as well because i just can't cope with this crap anymore..i can't work as everytime i do i lose my job or they stress me out so much it makes my migraines worse so he's going to see what we can do because over here the benefits system is pretty good and if i can perhaps take 6mths off work and try another med then without the stress it might work for me, who knows??!! I have also managed to get my consultants appt brought forward to 2 wks time so i will be back posting what new med i'm on and asking your advice cos y'all so wise! I just wanted to say Princess i read your other topic and you and RJ truly are angels even though you're going through so much pain and crap you're quick to help everyone else and support us all, for that i think i can say we all appreciate and love you both for it! Thank you all i don't know what i would have done without you, the tears have finally stopped, 3 days of constant crying and desperation is not good for anyone, but surely it can't get any worse right? :-) Deb
x IP: Logged |
Princessdinkydi
Member
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posted 25 February 2006 02:10 PM
Got my dang ER visit last night.
Couldn't stop the Migraine and had to go in.
I will try to post more later.Deb...hang in there hon. IP: Logged |
KA-DC
unregistered
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posted 25 February 2006 05:30 PM
quote:
Originally posted by DB-Alaska:
Hello, Yes I just started topomax about three weeks ago and I hate it! I have never had migranes and the doctor(s) diagnosed me with migranes and started me with this drug. I started taking every night 25mg first week, then 50mg the next week and now the beginning of this week 75mg(which made me dizzy when I woke up the next morning). Both of my hands and feet now tingle and get warm and I too have noticed a loss of my hair within the first two weeks and I am black. I am very very active. I teach aerobics, am an investigator that flys every other week have two kids (single parent) and was taking Tae Kwon Do(had to stop). I have noticed the confusion and ohhhh the mood swings have been horrible! I occassionally get blurred vision and am tired alot (I never lay down when I come home but I do now and it is frustrating). I get more side effects then it is helping the head. I had to talk to my family and explain to them that it is not me it's the medicine. Well I stopped taking it Tuesday and Wed and the tingling went away, now the prickly feeling has started today all over my body (maybe detoxing) and I stumbled on this website and others and it said not to stop taking. Darn it! But my headaches have not completely gone away (less pressure though). My headaches are not like pain, it is just pressure on one side. I can stand the light, loud music and still function. So I am glad to know that I am experiencing the same things as others but I still feel that this is not helping. I don't want to have more problems just to correct one. The weight loss I have not seen because I am thickly muscular. Well I guess I better take my medication tonight and go to sleep. God Bless
IP: Logged |
gmaxcook
Member
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posted 25 February 2006 10:53 PM
Debbie,
It seems your "episodes" were more often if I remember. Lucky for me, I had this one crazy one, I had one other minor thing, nothing drastic like my one suicidal moment. It was definately scarey. I was a little testy in the beginning with Topa, but that has leveled off. This new feeling came quite late in the whole scheme of things so that was a little worrisome. With all the knowledge I've gained from all my Topa buddies out there in cyber land (thats you guys!!) I'm well aware of what to watch for, so hopefully I'll be on the lookout and be able to head off the next big bad attack of the "bad thoughts". We'll see, if it gets too regular, I too will probably have to give up the less headaches & Topa for sanity & the damned headaches! SheilaIP: Logged |
AnnC
unregistered
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posted 27 February 2006 03:18 PM
I see the neurologinst tommorow because I've had migranes for 30 yrs, I'm 50 and have tried everything including antidepressants used for migraines. I haven't gone a day without Excedrine since last spring.
My internest wouldn't prescribe topomax without seeing the neurolgist. I'm crossing my fingers! (I also have added lbs -I think from meds!)IP: Logged |
kimberly
unregistered
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posted 27 February 2006 06:39 PM
Sheila...for the love of Mike...I'm sure you were pretty shaken after your experience. I have heard rather disturbing stories of medications causing symptoms like what you described, so I hope you are very serious about cutting off the Topo if this happens again. I can't say I've experienced anything like that from the Topomax. I have Bipolar Disorder, so--yes. On the down side of it, I've had those thoughts. I'm so sorry about those headaches continuing to plague you, Shelia. It's so frustrating. I know you must have really counted on Topomax to keep giving you relief and it seems like you're back at square one again. I wish I had words of encouragement. "Hang in there" seems so lame. Please know that you'll be in my prayers tonight, with Princess, Deb, Lydia, Missy, R.J., Maxi, Cookie, Mary and Shannon. Hopefully, I've left out no one (I've written down all names). May God look after us all. Hope you and everyone else has a better, more comfortable day tomorrow. Kimberly IP: Logged | |
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