Considering Topamax

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Susant
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 2/25/2007 12:12 PM (GMT -6)   
Hi,
I have been a migraine sufferer for over 30yrs.  Recently they have increased a lot. Last Friday was the worst. I must have vomited 20times and was in such severe pain that I ended up in emergency. Had a shot of Demerol and Vistoral and went home to try sleep it off. I awoke the next morning at 10am. feeling bruised,depressed,but not in pain,thank goodness. I have considered taking preventative meds before but never have now I'm at the point were I need to. I am having migraines way to often and I'm SO tired of them.
I will be seeing my Dr this week. can anyone tell me what is the common doseage of Topamax to start with and is it Topomax or Topamax? Thanks

kymark
Regular Member


Date Joined Dec 2005
Total Posts : 86
   Posted 2/28/2007 7:15 AM (GMT -6)   
Hi Susant,

Different drs. will use different dosages, but the pills are, I think, available in 25mg. increments. Do a Google search for Topamax migraine titration and you'll find several sites with suggested beginning dosages and schedules for increased dosage rates. However, your doctor may adjust that depending on other medications and medical conditions. While potentially very helpful, Topamax is an extremely powerful drug with many possible side effects that require careful handling -- it can work wonders but is nothing to fool around with! I don't say this to scare you -- it's helped me a lot, but there's a thread on this discussion list (within the last week or so) where someone's doctor started them on 200 mg daily -- an absolutely crazy decision, in my opinion. Anything higher than 25 or 50 mg per day to start with should set off warning bells. My neurologist/headache specialist has said her target dosage is 200 mg, but that's after 3 or 4 months of slowly building up resistance to side effects and seeing if lower doses can achieve results first.

Good luck!

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 3/3/2007 3:56 AM (GMT -6)   
Hi Susan,

Welcome to Healing Well. Kymark has given very good advice here as you cannot be too careful with drugs like Topamax. At the end of the day always discuss these things fully with your Doctor!

I am so sorry you have been suffering so much with this and I hope you and your Doctor can find a way forward that will bring some real relief for you!

take care

Ann
Co-Moderator of the Migraine/Headache Forum


Susant
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 3/8/2007 3:12 PM (GMT -6)   
Had to go to Drs again yesterday for a shot of demerol and vistoral. I have been having such an increase in migraines and the severity. anyway I mentioned Topomax and he decided to start me on Metoprol instead. Has anyone tried this(not sure of correct Spelling).
 
Also today I feel "out of it" my tongue feels numb and I am slurring a few words, I feel like I can't concentrate.
My drs has ordered a CT for next week.the last one I had was about 25yrs ago.
I'm sure what I feel today is just a result of being so overwhelmed and exhausted from yesterday.
 
 

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 3/9/2007 2:09 AM (GMT -6)   
Hey Susant,
 
Welcome to the boards.  I saw your first post on Topamax, and got a lump in my stomach.  Topamax was absolute POISON for me.  I started on a small dosage, but titrated up to 400mg!!!  I literally got permanent brain damage from this medication.  I lost a lot of memory function (especially short-term), cognitive abilities (couldn't form thoughts or express them), couldn't complete sentances, etc...Just basically brain mush.  I stopped this medication over two years ago, and a significant amount of damage is still with me.
 
I am so thrilled to hear that your doctor didn't put you on Topamax.
Metoprolol is in a class of medications called beta blockers, which work more with your blood chemistry, rather than your brain chemistry.
 
Give it a try for a while and let us know what you do.
 
Leigh Ann cool

"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


jphsr
Regular Member


Date Joined Mar 2007
Total Posts : 21
   Posted 3/9/2007 10:18 AM (GMT -6)   
i was on the topamax for awhile thye started me on 25 mg and kept increasing it until i was at 100mg thats when it really started bothering me was naushish lightheaded dizzy....my doc finally took me off it...each peorson is differnt in how there body adjusts to differnt meds it my work for you .....good luck and i hope it does work for you                 jphsr

deejane
Regular Member


Date Joined May 2006
Total Posts : 74
   Posted 3/10/2007 11:16 PM (GMT -6)   
Well. I want to throw in my 'TWO CENTS" worth. Topomax has been a dream drug for me once I got through the initial phase in part getting used to the drug itself and the dosage. I rarely have more than two migraine in a year anymore. The one I have right now is due to the fact that I let my prescription run out and didn't get it filled for four days!! Bad idea but definitely my mistake! I certainly won't do that again! But, it has truly helped my life become liveable again.
deejane
 
Current DX:  psoriatic arthritis/rheumatoid arthritis/spondylitis/fibromyalgia, CD, carpal tunnel, degenerative disc disorder, nerve damage, high blood pressure
Current meds:  Remicade 400 mg. every 5-6 weeks, methotrexate 15 mg., celebrex, micardis/hct, folic acid,
flexeril, topamax, toprol XL, lortab 10-500, zoloft, and now nitroglycerine
Previous meds:  Enbrel, humira, bextra, vioxx


LadyAislin33
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 3/14/2007 10:27 AM (GMT -6)   

Hi Susant,

 

First, I am sorry you have been feeling so terrible.  I've been you in you situation recently and there is nothing worse. 

 

about Topamax, I am currently on 200mg a day and I don't suffer to many side effects from the drug.  I tingle in my feet a little bit here (less now then when I first started and most of the time I don't even notice anymore) and sometimes it is hard to find words.  But that is bad news for me.  The good news is that it for the people it works for it truly is a wonder drug!  I know for me, I won't let my neurologist take me off of it because it dampens down the pain of my chronic migraine cycle.  It is also known to be a weight loss drug and some doctors using it as such (so I've been told).  This drug has really worked wonders for my friend and I. 

 

Also, I do agree with the earlier post, about how you need to build up your tolerance with the drug.  Topamax is not one to play around with if you ever decide to go that way.

 

If you don't mind me throwing my two cents in about your pain management as well, may I suggest the narcotic Dalludid.  I personally hate Demerol with a passion because it leaves me with a terrible hang over (and I always need at least two shots of it). 

 

But what I am also worried about is if you are experience rebound headaches due to all of the drugs.  I was in that horrible cycle and it just keeps repeating itself until you get hooked.  (My neurologist detoxed me in Jan.) So please be careful.

 

I really hope the pain goes away soon.

LadyAislin33


Susant
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 3/14/2007 1:24 PM (GMT -6)   
Thanks everyone for all your support and advise. I have a migraine again today,the same one since last night. Imitrex didn't work.so when my husband gets home later I will go get another shot. Is Dalludid a medicine I can get at the ER  instead of demerol? although I do like the way demerol works and agree I seem to be having rebound headaches.I had the ct on Monday,no results yet. although I'm positive these are ususal migraines.
anyone know how long before the Metropolo takes effect? I started them last Friday.
thanks
Susant

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 3/14/2007 8:04 PM (GMT -6)   
As for pain shots at the ER, Dilaudid works best for me with 25/50mg of Phenergan.  I also request a small amount of LORTAB for any residual headache.  I don't even feel Demerol, and it takes a double shot of morphine for me to feel any relief.  The last time I got went to the ER, I got an IV of benedryl, compazine, dilaudid, and DHE.  The benefit of the DHE was that there wasn't any residual headache the next day.  DHE, also called Migranol, is also used as an abortive in Nasal Spray form.  It has been my saving grace!!!  It is in the ergotamine family.  After literally years trying or using every other medication, I luckily ran across this at the ER.  Years ago it use to be the standard treatment, but now Doctors just want to give you a shot of pain killer and send you home.  Treat 'm and street 'm.  Give the Migranol a shot, it might help you too.
 
Leigh Ann cool
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


Bam2007
New Member


Date Joined Mar 2007
Total Posts : 10
   Posted 3/22/2007 11:59 PM (GMT -6)   
hi there susandt, sorry you have been through all this. It's amazing to me to see how all the meds work diff. for everyone. I have had migraines since I was twelve. never this bad thought. I have had a bad case of migriane since late Oct. last year. And like everyone I tried topomax. Hate it it I started at 25mg and by the time I stopped taking it I was at 250 mg. The neuro kept switching my meds from demerol-imitrex-zortig-threee other that I can't seem to remeber. anyways none of them worked for me. I started on moday with butblt(butabital) generic for foricit. It made my headache worse. Now I had nausea and still the pain would not go away. I left a msg to my neuro yesterday. I'm still waiting for a response. I have stopped taking my meds and have focus on a better diet and working out more. I'm not feeling as bad but the headache is still there throbbing on my left temple.
I have done numerous testing (mri-ctscan) and all have been negative I now feel that unfortunatly there is no cure for migraines and until you find the right med that works with your bod you will be fine.
I really wish you the best. take care
-BAM2007
Bam2007


sandiLa
Regular Member


Date Joined Mar 2007
Total Posts : 47
   Posted 3/23/2007 12:45 AM (GMT -6)   
Sorry you've been having trouble with mirgraines, they are terrible.  I take Topamax and have since last May.  I started on the 25mg. and my Dr. titrated me up to 100mg. which I'm still on.  It works wonders.  I seldom get a mirgraine, when I do I take Maxalt.  I used to take Immetrex but it made me nauseated and then I needed Phenergan which knocks me out so I try to avoid that when I can. 
 
I don't have any side effects with Topa, the one thing you have to do is drink lots of water with it.  It keeps all the tingles away for sure and the brain fog.  There is a message board called The Topamax Trip http://p218.ezboard.com/bthetopamaxtrip.  I learned a lot about the drug there.  Good luck to you and remember don't let the Dr.'s and Nurses get to you, you're the pt. that's what they're there for, to make you feel better.

DancingLady
New Member


Date Joined Mar 2007
Total Posts : 2
   Posted 3/25/2007 2:18 AM (GMT -6)   
Hello Everyone: I new to the forum, but it found it last night when I was looking up something that happen to me. For all of you whom get migraines. I'm 44 years old and I've been getting migraines since I was 6years old. I have suffer over 38 years and I have had all the test and you name it. It is really hard to find a doctor that really knows about migrains and the pain it causes and the time a person can miss from work with them. about 4years ago I meet a really nice lady whom it an RN and she was on disability for her migraines, she started getting them right after she had a hyster. I'm not a great speller so please exuse me. Anyway she gave me a name of a migraine doctor in Baltimore MD ( I would be happy to give the information to anyone that live around that area.) This is the best doctor I have ever had in my life, very understanding etc... I started to get nerver block in my head, yes they hurt,but when you are already in paid it just does not seem to matter. These blocks helped me a lot, but it is not something that you can get on a regular basis. Research has found that taking medicine that people take for seizure have help people with migraines greatly. I'm not sure if I'm allowed to give out name of medicines so I'm leave that part out. I tried these, but did not seem to have any luck with them. My doctor said that she wanted to try botox. I started getting botox injections about 2years ago. I go every three months and I get about 30 injections in my head. These injections don't hurt to bad, but it has been a mircle for me. I have not had a full blown migraines. I did have a bad period last year about this time and had a migraine for 2 months so the doctor changed the area based on where my pain was coming from. My paid is more on the left side. I have just found out that botox is not something that you could do for the rest of your life, because it can break down muscle tissue and since I get the injections all along the my head down my neck I have to be carefull because I have a fusion in my neck. Well there is more help out there for us migraines suffers. There is a plastice surgeron in Georgetown, MD which is in the Washington DC areas he speciality is never pain and damage. The surgery for migraines is decompressing the nevers in the front of you head and then if you still are having problems you would have the nevers decompress in the back. My girlfriend has already had the surgery on the front and now she has to have the back of her head done. She also has a tens unit inplanted in the back of her head which helps with pain. The success rate for this surgery is 90%. I have already had a meeting with the doctor and he wants me to have the surgery. I'm not going to jump on the band wagon right at this moment, because I was on disability for 5years because I have had over 7 back surgeries and I just found a job that I can do without going into an office, but I"m going to have it done within this year. I would be more than happy to give anyone the name of the doctor, but you would need to have another doctor that has worked with you with your migraines to send him information. The surgery is one day and just 10% of people did not have any relief, but they did not get any worst. This is what I do when I start to get a migraines. 1. Ice pack on my head, 2. Dark room 3. Dont' move a musscle and it I can I will get in the shower when I know it is coming and let the water run over my head. I have been to so many emergency rooms for migraines that it is not funny and most hospital do not understand the pain or they think your there for drugs. I have one hospital that I go to and when they see me they take me right back. If you get migraines do not take over the counter pain medicine for them. I did this for years and this can cause you to get rebound headaches really bad. I don't take any over the counter medicine. I really feel for all of you that get migraines and I've tried everything that is out there. The only thing that has every helped me to be headache free is the botox. Before then I had headache everyday!!!!!! I hope that this information will help someone and that maybe you can talk to your doctor or find a nero doctor that will really work with you and try to understand your pain and find out what will help you. In the beginning it is hard to find the right combination, but I know that there is hope after 39 years. I have tried Topamax twice, the first time I started having sever pain in my feet I did not know it was from the medicine, I thought it was either from all my back surgeries and it was nerve pain or spur, or it was my tarsel tunnel coming back that I had surgery on. I finally ask my doctor about it and she said that it could be the topamax so she took me off. I was some what upset, because I thought this was going to be the mircle drug I was waiting for over 38years, plus I know several people that have taken it has lost lots!!!!! of weight. I was hoping that would be a side effect for me, since I have gain a lot!!!!! of weight from DRUGS when I was going thru my 7 back surgeries. After I was off most of my meds for my back my doctor tied the topamax again. For about 2 1/2 months I have sever headaches and I have hives like you would not believe. Sent me to the hospital several time. They could not figure what the hives were from so I stopped all my medicines. Still had hives so my doctor thought it could be strees/nerves so she put me on Xanax. I have not had any hives since. So I really don't know if it had anything to do with Topamax or not. I know that lady that works in the office where I go for my mirgraines has been taken topamax for a long time and she lost lots of weight, but it caused her to have very bad kindey stones and she had to have surgery. Doctor took her off the Topamax right away. I'm like everyone else. I think you just have to try out things to see what is best for you. I highly agree with the taking to much of pain medicine, because it will give you re-bound headaches. If you have to go to the ER more than 2 in one week ask them to try several other type of meds first before going for the pain meds. I have had some many pain meds that it is like eating candy for me and it take a lot for me to even know I had a shot. For me the Botox has been my mircle and I'm looking into the surgery.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 3/25/2007 10:47 AM (GMT -6)   
Hi Dancing Lady,

Welcome to Healing Well. My goodness you certainly have been suffering for a long time with this wretched disease!!! Glad you have found something in Botox that helps you at least for a while, I should imagine that has been very expensive!!! Sadly the cost of some treatments means that they are prohibative for a lot of us!!

I must confess that I have never seen surgery as an option, and this is nothing to do with cost! I may be wrong but I didn't think that research had proven surgery effective enough to be worthwhile!?! Wishing you all the best!

take care

Ann
Co-Moderator of the Migraine/Headache Forum

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