posted 09 June 2005 05:02 PM            

Gabbysdad - I am sorry to hear about the liver counts being up but glad to know that you discovered them! What I am most happy to read about is that you have not had a migraine since April. I will certainly be having a toast to that the next time I have a beer in hand!

Shannon - you made me laugh when I read how you whispered back your response to the question of "Do you have an eating disorder?". I am at my normal weight. I am conscious to eat, in order not to drop my nutrients or lose any more hair - but when I can't I hate how people pick on it and when I read what you had to say - I just had to giggle. - Love it. You go!

Auntchel - Thanks so much for the post! I went there. Great site too by the way. You rock for thinking of giving us that.

So - something bittersweet hit me when I read Rics (Gabbysdad's) post. So many people come and go here. I noticed that without being conscious of it, I really truly wonder how many are that haven't been around so much lately. Funny how we don't even have a face with the name, yet can build a relationship here and empathize with a persons challenge, understand a part of their life that many can't, laugh a little, and wish the best for them sincerely. So - if anyone has spoken with Princessdinkidi, Marlene, Goju or any of the others.... pass along healthy wishes from my end. Then I started thinking how awesome it is that someone took the time to form this site for us. -Have learned so much here.......Thank you to whoever that is - From me.

posted 10 June 2005 10:11 AM            

Well said, I couldn't agree with you more. I cannot count the number of times I have come to this site for understanding, good information, to vent or to make sure that I'm not going crazy! We are all going through something that so many others have no clue as to what it's like. I wouldn't wish migraines on anyone...wellll, maybe a chosen few - KIDDING! My boyfriend is completely understanding, for the most part, even though he has NEVER had a headache in his life - UNBELIEVABLE! But there are times when even he insinuates that I have some sort of control over my migraines. We always get past it, but it really bothers me- I wish I had control!! I know he is usually just frustrated because I have become isolated and want to be left alone until I fell somewhat "normal". So when that happens I know where to turn! It's nice to know that we all have a place to come where people are going through the same things, having similar experiences and who will understand.

Thanks to everyone for all of the continued information and support. I'm not sure what I would have done without this site, especially when I started on Topa. The SEs freaked me out! I'm so glad that stumbled upon it!

I occassionaly receive an e-mail from Goju, which I truly enjoy. I feel like I know some of you even though we've never "officially" met - RJ, Gabbysdad, Chappy, Goju, etc. You were the ones around for me in the beginning and you will never know how much you helped and continue to help. If I haven't said it before... THANK YOU! And thanks to everyone else who contributes and shares on this board too.

posted 10 June 2005 05:58 PM            

Now - on a separate note...a concerned note:

Freak - I'd go back a few pages, print the post from Italiondad and take it to your M.D. before using Topamax as a mood stabalizer and do your research. Certainly do let us know how it goes.

posted 11 June 2005 09:51 AM            

We're always eager to hear negative feedback as well. Is there anything we can do to improve the website (not just the discussion board)? We're always interested in hearing from our visitors.

posted 11 June 2005 06:23 PM            

I have had migraines since I've been a teenager and have taken whatever drug was offered at the time but have become addicterd to Excedrin Migraine the past, I guess, taking it at least 2 times a day to ward off the rebound headaches it causes and when a migrane takes hold I take RELPAX. I've beren so sick of the routine, my new doctor put me on TOPAMAX and I started on the 3 week build-up program with 25mg regime until I reached 100mg. which I'vew been on for a month when the ugly symptoms appeared. I've always been very sensitive to any drugs and always needed smaller doses than anyone else to get results and really don't like taking any drugs. I was willing to push through though when the doctor told the side affect was WEIGHT LOSS! YIPPPPEEEE! I thought I could endure anything for that! Have 't lost even 1 pound! UGH! Forget it! Do I have to wean myself off this? Or can I just stop it. I have to wait two days before I can call my doctor. Ad I run out of the pills TODAY!

[This message has been edited by Joy (edited 11 June 2005).]

posted 12 June 2005 01:38 AM         

The side effects seem to vary greatly person to person both in intensity and duration, and it just boils down to--is it worth it to you? Does it help, or do you think it might help if you up the dosage? For some, it's not worth it and they go off, for others, the bad stuff is worth it if it helps reduce the number of days in bed with migraines.

posted 12 June 2005 07:25 PM           

I just started taking Topamax two weeks ago. I'm at 50 mg, and haven't had any side effects that I'm aware of (though I'd love the anorectic one <lol> ). I wonder, though, if anyone has experienced swelling or edema with this drug?

I'm 40 years old, healthy, pretty thin (starting to sound like a personal ad <lol> ). Just saying this so you'll know that I'm not demographically prone to edema...but during the past 48 hours or so, my pants no longer button, and my wedding ring is squeezing my finger off!! I've had that ring on every day for 16 years, and this has never happened before, so I wondered if maybe it's a side effect? I did read that tingling in the fingers can happen, so maybe fluid in the fingers can happen as well? Anyone? Not to give TMI, but I am also just now finishing my first menses on Topamax, so does that have something to do with it? It's seriously freaking me out.

No headaches for two weeks, which is great, bu it might not be worth it, if this is the cost <sigh>.

posted 24 June 2005 05:28 PM            

Welcome. Sounds like you are going through alot. Even though you might not feel it right now, but you are actually very strong to have endured all of that! I think its remarkable that you wrote back and know that you want to get on a path that is clear and won't leave life in a cloud due to being strapped down by drug "trial and error". Too many people get caught in the hear and now and don't even think about that. That is awesome.

I couldn't tell from the post if when you called your old Dr. it was for the refill of Topamax or just another type of refill? In regards to the hair loss - if it is because of the Topa, I was just going to mention that it did get better for me and level out. One thing that I noticed is much of it is due not to the medicine itself, but actually to the lack of nutrition. I have actually durastically slowed my hair loss by taking pre-natal vitamins and eatiing protiens and Calcium. I also take potassium and chondritan. My nuero warned me that the misperception is that it is the drug causing the loss of hair, but is usually a result of not eating - which is instigated by the drug. I picked up my pre-natals at Sam's club. (I'm not pregnant but take them becuase they are high in Folic Acid.)

Let us know how you are doing..... I hope better.

posted 28 June 2005 04:01 PM            

In regards to your post, I was sad to hear that your doctor was frustrated with you. I know doctors are human too, but they should show concern not frustration. Sometimes they forget about compassion I think ( shall we put some of the blame on the insurance companies and their demand to turn over "X" amount of patients in a day??). You have enough of your own frustration to carry around. Can you find a supportive MD? Did your MD specifically tell you they were frustrated or is there a possibility that you read him or her wrong? If not then, my opinion would be this is not very professional or hopeful for you. I recommend getting a second oppinion for your case then. You don't need to feel the guilt of someone else's frustration. MD's have other people than their patients to turn to with their frustrations, especially when they know their patients are frustrated with their own health. Like I said, they are human, but there is also a bedside manner to be had and a commitment of care. Don't feel guilty about finding yourself a new Nuero - and let the next one know why you did too. That way they will take their time with you and also take you seriously...not making the same mistake. Anyway - it's your body - you have the right to get frustrated first and foremost.... the MD can spend their time and energy getting savvy on getting you well.

Hope you feel better,

posted 29 June 2005 08:22 PM            

Hey,LP- I would think that 2 weeks is not long enough, simply b/c it takes longer than that to even get to the therapeutic level (usually at least 100mg or more)

Hey, Chappy! I haven't tried that med, but the dr. told me that beta blockers would be the next step for me if I chose to continue (have been off the topa for about 4-5 weeks now) However, I really believe my migraines are hormonal, so I'm looking into some other types of treatments right now.

posted 01 July 2005 02:23 PM            

I am going through a persistant one this time and it's not giving. Day 5. I am dosed out on the triptans - can't take anymore Zomig - and my nuero had me laying in the office with a shot of Demurol and Visterol. That would be Wednesday ...... - which worked to relieve the pain of my muscles (from attempting to wrap my head in my shoulders like a turbin to protect it)but not my headache. I am really frustrated and getting sad. I thought this morning I was headache free and now I am sitting here with this frustrating throb, the spins and nausea again. My nuero is off today but asked me to go to the emergency room if I had it still today. #1. My boss is not understanding of my incapacities. #2. That just seems so dramatic to me and by the way - I feel like a hypochondriac. How embarrassing. I just got done telling my S.O. that I didn't have a headache this morning - I swear it didn't feel like I had one while I was laying in bed. Now - I feel like I am going to RALPH again....... Nice. I hope the "Take-your-pain-away-fairy" comes along and knocks out the "migrain-monster" because I am also just a little crabby about this!

Sorry.... I had to vent.

Now - I hope the rest of you are feeling the extreme opposite of me and doing well.