Side Effects of Topamax or Other Migraine Medications

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Nicky (coquitlam55)
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Date Joined Jul 2005
Total Posts : 505
   Posted 7/10/2005 12:52 PM (GMT -7)   
Hello,
 
I have suffered from Migraines for the last 10 years. I went off sick from work in December when they hit an all time high and returned to a new less stressful job about three weeks ago. Unfortunately, it's not been a bed of roses. I thought I was ready to go back to something closer to home that was less demanding.
 
My neurologist took me off neurontin about six weeks ago and put me on topamax. I also take celexa and nadolol. During the past 10 days my headaches have been back with a vengence and I'm now experiencing severe nausea. I know a possible side effect of topamax is weight loss but I didn't think it was because I couldn't eat anything. In the past two weeks I have lost eight pounds because I can't stomach any foods but really bland plain foods such as crackers.
 
Has anyone experience side effects like this? If so, what did you do?
 
Thanks!

droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 7/10/2005 11:18 PM (GMT -7)   

coquitlam55

 

I experienced similar side effects to topamax  My current neurologist told me that the previous one had me on too high a dosage.  It was lowered but I still have problems with nausea and have to carry phenergan everywhere I go.  I am trying to give the topamax a chance but have not seen the kind of resuls others here have seemded to.

 

Keep in touch

 


droll  (AKA Dan)


razzle51
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Date Joined Jan 2005
Total Posts : 763
   Posted 7/11/2005 5:41 AM (GMT -7)   
   I am having a terrible reaction to Topamax , very very dry mouth and coated yellow tongue , plugged salvia gland , taste of salt and my sense of smell is gone . does anyone else experenced this.
Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999


droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 7/11/2005 12:12 PM (GMT -7)   
This is the first time I have heard of these side effects. I would see my Dr. immediately. If you have a good pharmacist I would talk to him/her also. One side effect I had you need to be careful of is lowered white blood cell count.

Take care and be careful

droll
droll  (AKA Dan)


tysmyboo
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Date Joined Dec 2004
Total Posts : 921
   Posted 7/11/2005 6:06 PM (GMT -7)   
razzle51-
Email me and share your experience with Chiari Malformation if you wouldn't mind.

Sara
Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


tysmyboo
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Date Joined Dec 2004
Total Posts : 921
   Posted 7/11/2005 6:08 PM (GMT -7)   
The key to Topamax is to start at the lowest dosage and stay there until side effects are minimal and then slowly continue to taper up to your desired dosage. I have found that several doctors do not do this at an "optimal" pace. I had to stop Topamax and start over twice now....the slower the better, promise! Talk to your doctor about any side effects or questions- remember you are the one taking the medication and it needs to work for YOU...
 
Sara
Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 7/11/2005 10:06 PM (GMT -7)   
Sara is absolutely right!! I am on my second try at topamax because the Dr. moved me up too high and too fast.
droll  (AKA Dan)


razzle51
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Date Joined Jan 2005
Total Posts : 763
   Posted 7/12/2005 9:32 AM (GMT -7)   

I did start out very slow since last dec. now up to 100mg 2 times a day an just recently beginning the dry mouth with other side effects. But also with other meds flexerill, lexapro mouth drying meds. went to see specialist  along with my dentist and gp all are working with me. I was on Neurontin for nerve pain and that med I gain 50 lbs and and got 11 cavaties and never had a cavitiy in my life was that a shocker. so my gp took me off that and put me on Topamax. I think that is the med that is causing all the problem. So now I have to see an oral surgeon to get the saliva glands open. and see my gp to revaluate my meds . It is not painful , the specialist called it chronic dry mouth it is very very annoying and the salt taste is driving me nuts. He said drink alot of water which I can not it bloats me bad. Oh me .Roz sad


Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999


droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 7/12/2005 11:51 AM (GMT -7)   
Almost everyone experiences the dry mouth but I have never heard of it to this extent. Are you getting that much benefit from the Topamax?

Good luck!
droll
droll  (AKA Dan)


stox4pat
Regular Member


Date Joined Jul 2005
Total Posts : 214
   Posted 7/12/2005 12:55 PM (GMT -7)   
Hi loved ones :~) Please trust that I am not being negative, just honest. Now, I HATE Topamax and think it should be taken off the market (those that it helps PLEASE dont get angry with me...I love you all). I was put on Topamax for my seizures (see below for all my illnesses), but I still had migraines at the time and it didnt help at all as far as the headaches. Now as far as the sides I thought I was losing my mind (and I was taking a very small dose). I lost 20 lbs in a month, not because I didnt have an appatite, I just spent the month feeling like I was on a bad trip or something. I had all my shades and curtains drawn and stood at the window peeking out the window waiting for the aliens to come and get me. Please dont think I am psycho or lying or nuts, etc. it is true. I am here to help, not hurt anyone. I do not drink or take drugs, except those that are prescribed for me. I am well aware that most migraine sufferers think Fioricet is a joke and yesterdays news. But my friends I swear by it. After 30 years of having grand mal seizures, my brain is beat up. Now, let me say that I would agree about the Fioricet, it is a non event as far as making u feel better. I tried it as I cant take triptans. But have any of u suffers tried Fioricet w/Codeine? I understand if u dont want to take a narcotic pain reliver, however the amount of Codeine is equal to a Tylenol #3 (aka: not much), but with the caffeine, butalbital and acetaminophen it will knock your migraine right out Let me know if u have any further ? as I am an expert with this! One more thing, if u try this med...just be careful and only take it when your headaches are vicious! Hope u try and get better!

Love to you all,
Patti ;~)
Epilepsy (31 years) Depakote, Keppra-grand mals, Valium-myoclonic jerks
 
Colitis    (4 years)  Donnatal
 
Infertility (20 years)
 
Migraines/daily headaches (5 years) Fioricet w/Codeine
 
Depression (4ever) Effexor 150mg


stox4pat
Regular Member


Date Joined Jul 2005
Total Posts : 214
   Posted 7/12/2005 1:08 PM (GMT -7)   
Oh yeah! I forgot to say...if possible and you are not interested in the Fioricet w/Codeine, try Depakote...that is the BOMB!

Love,
Patti:~)
Epilepsy (31 years) Depakote, Keppra-grand mals, Valium-myoclonic jerks
 
Colitis    (4 years)  Donnatal
 
Infertility (20 years)
 
Migraines/daily headaches (5 years) Fioricet w/Codeine
 
Depression (4ever) Effexor 150mg


kittycat27
Regular Member


Date Joined May 2005
Total Posts : 438
   Posted 7/12/2005 1:39 PM (GMT -7)   
 I just wanted to throw my few cents around. I am in between studying for two classes, gotta take a break evry 25 minutes to let my brain absorb all the enough. Anyhow.... I want to say I love my topomax, it has been a dream. I don't want to say it is the only reason I lost weight though, I do have to eat healthy and workout, ( diabetes type II), so I think it was a combo of all. I started topomax after coming of depakote. OHhhhhhhhhhhhhhhhhhh depakote, helped quite a bit , but didn't in the weight area. I packed on 20-30, in the six months of depakote. YIKES!!! If you can handle the weight gain it is a terrific drug, unfortunately I couldn't. I know everyone refers to topomax as the dopomax or stupamax , but I haven't seen those side effects yet. I take 100mg, and about to increase to 150mg, the max I will go. The reason is I am in school and can't afford those side effects. I just wanted to say that, every med works different with each one of us. I just need to get my depression under control.Happy posting , love kitty. :-)

droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 7/12/2005 2:21 PM (GMT -7)   
The side effects from Topamax that stox4pat is experiencing is rare I believe. I would hate his comments keeping someone from giving it a try. I have not had much benefit from the drug but from what I have read here there are a lot of people who benefit from it. I guess what I am trying to say is don't be afraid to give it a try if your Dr. thinks you should
droll  (AKA Dan)


tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 7/12/2005 4:50 PM (GMT -7)   

Razzle51-

the combination of medications could be contributing to some of your issues....Other medications can make the Topamax feel stronger and alter the side effects making them more pronounced.

 

Sara


Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 7/12/2005 11:12 PM (GMT -7)   
Sara-

Thanks for the email, I appreciate it. There are some things I would like to talk to you about. I tried to send you an email but apparently there is a problem with yahoo mail right now. I will try again tomorrow.

Thanks
droll  (AKA Dan)


Pegasis
Regular Member


Date Joined May 2005
Total Posts : 118
   Posted 7/13/2005 11:14 AM (GMT -7)   

For kittycat27---It IS odd that different people get different side affects from the same drugs. I had trouble with Depakote, too. But my trouble was short term memory loss. My husband would tell me where he was going and would leave the house. The phone would ring and I'd wait for him to answer it. I was recovering from an illness and many people with the same illness had the same memory problem. So it was a couple of years before I asked a new migraine doc if it could be either of my migraine meds. He kept me on the Elavil and took me off the Depakote. Then he put me on Topamax. I'm up to 200mg Topamax, taken 100mg in the morning, and 100mg at night. I don't notice any dopamax that people talk about. And I don't think anyone else has ever mentioned memory trouble with Depakote. But getting off the Depakote cured my memory. Just wish stopping it hadn't brought back the migraines.

I hope you tolerate the Topamax well and don't get those awful side affects. Happy studying!

~~Pegasis yeah


razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 7/13/2005 11:51 AM (GMT -7)   
Hi Sara I tried to email you also and it seemed something was wrong too. I am not giving Topamax a 2nd chance . But yes it worked good for my nerve pain. Does anyone know anything about Tranzodone or something like that. Is it a dry mouther also. I have a referral to an oral surgeon to get my saliva gland s open and will see my GP monday to talk MEDS . I may need to go back to My Pain clinic and see what he has up his sleeve. Thanks to all of you for your imput. Roz :-)
Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999


tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 7/14/2005 5:27 PM (GMT -7)   
Yes, I have taken Trazodone before and it made me sleep alot, had really dry mouth and packed on the pounds.
 
Dan and Roz- you can email me at SaPena26@insightbb.com
 
Try that, hopefully that will work! 
Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 7/15/2005 3:01 PM (GMT -7)   
No way Jose , I packed 50 lbs on with Neurontin , I am not going there again. nono   Roz
Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999


Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 7/15/2005 9:42 PM (GMT -7)   
Thanks everyone for your input. It was very insightful. Just knowing I'm not alone has been helpful! I'm happy to say that I'm starting to feel better. I drank a Latte and a Cinamon Roll today! I never thought I would be happy to drink and eat those.
 
I went to the doctor (GP) yesterday and he feels that the extreme nausea was increasing the dosage of the Topamax too fast and the severe headaches reducing it too fast trying to stop the nausea. I have found a happy medium of 25 mg in the morning and 75 mg in the evening. I am going to stay there for one to two weeks and then try adding 25 mg. I really like the suggestion to increase the dosage and not add anymore until the side effects have disappeared.
 
I realize that my body really reacts to medications and any changes can throw me into turmoil. Someone mentioned feeling you like they were on a bad trip. I have never taken "drugs" that weren't prescription, but I imagine that's how it feels. One 200 mg, when I felt nauseous I also felt like I was bouncing off walls.
 
Someone else mentioned pain killers and narcotics. I know they work but I just end up in an endless cycle of rebound headaches. I have lost count of the number of times I have gone throgh weaning off narcotic pain killers because if I stop them cold turkey I end up with rebound migraine headaches.
 
The other challenge I have is that I only see the neurologist every three months. He is very good but doesn't know me very well. He prescribes what generally works and because I tend to be very sensitive to medications I often suffer at this hands. I now go back to my GP with his recommendations and we work out a plan, because my GP knows my a lot better.
 
I also get BOTOX injections for my migraines. They are about 50% successful and when I'm old enough to get wrinkles I won't. My extended health (Canadian medical coverage for prescriptions) covers the cost ($400) because it is prescribed as a medical necessity. The only problem is that it takes 19 injections in my forehead and that triggers a migraine every time.
 
I've rambled long enough. I just wanted to share my week's challenges and successes. Thanks again for everyone's input. It's nice to know to have others to bounce ideas off of.  yeah

Pegasis
Regular Member


Date Joined May 2005
Total Posts : 118
   Posted 7/29/2005 5:34 PM (GMT -7)   
I passed out in my physical therapy session on Monday. I was unconscious for several minutes. A doctor from another office was there when I came to. They had me stay put for several more minutes while he checked my blood pressure and heartbeat several times. Then they took me by wheel chair to his office where they did an EKG (normal) and some finger-prick blood tests.
 
I was nervous and my blood pressure showed it :) but I calmed down after about a half hour. My blood pressure got back down to normal and heart stopped trying to jump out of my chest :)
Two of the blood tests came back unusual. One showed that my hemoglobin was very low. Dr. Felix said it meant that I was anemic and explaines why I keep getting dizzy. The other test showed that I had very high blood sugar and he thinks I have type 2 diabetes.
 
I'm wondering, has anyone known of Topamax or Elavil to cause unusual blood sugar or hemoglobin readings? Or to cause high blood sugar?  Because if it's the medicine, it's a lot easier to fix.
 
~~Pegasis confused

fierra
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 8/22/2008 7:58 AM (GMT -7)   
hello,
  about a month ago I was put on topamax and I encountered a similar reaction where my migraines increased (so I'm glad I'm not alone there) My question is, has anyone experienced any gland swelling?  I know it sounds weird but I have had 2 occurrances of what I am assuming are the lymph glands behind my right ear and near my left jugular being swollen and painful.  I am not sick and this has never happened before...even when I have a sore throat is bilateral!  Just wondering if its the medication or it I should be freaking out about lymph cancer or something like that.

Meezermom
New Member


Date Joined Aug 2008
Total Posts : 10
   Posted 8/23/2008 10:55 AM (GMT -7)   
I have been on Topamax for at least three years and have done great with it! When my doctor started me on it though, he started me at a low dose and increased it slowly.... My niece was put on it a year and a half later and her doctor started her on a pretty high dose, nearly double what I was on at that time and she had all the same problems you guys are mentioning!! When it got so bad, her dr backed her off but it didn't help so she had to stop taking it... I started with Celexa and was switched to Lexapro which worked better for me..... I am still on them and having no trouble and very few migraines, maybe a few a year... So maybe you need to talk to the dr and find out if he started your dosage too high.

fierra
New Member


Date Joined Aug 2008
Total Posts : 2
   Posted 8/23/2008 2:28 PM (GMT -7)   
She started me off on 50mg 1x a day which according to pamphlet is pretty standard.....and dear god I hope I don't have to be on it for years, my doctor said just a couple months to balance things out....is years standard? not a fan of drugs unless its the last possible resort (because they do thing like make my glands swell and make my hypocondryia act up) But thank you for imput, I will definately check with my doctor to see if this is normal. I have an appointment in 2 weeks. I'm very glad to hear the medication is working well for you...migraines suck. :P

arissa
New Member


Date Joined Aug 2008
Total Posts : 1
   Posted 8/27/2008 4:43 PM (GMT -7)   
I recently started having migraines 6 months ago. The first time I went to the ER, they sent me home and told me to see my opthamologist (they thought my vision was bad because of the blind spot and flashing lights I was describing. When I went to my family doctor, she prescribed maxalt which works very well if I take it at the first sign of a migraine. I was reading earlier posts on this site and someone mentioned how bad triptans were. This concerned me because maxalt is a triptan. I was reading other posts that said triptans were not to be taken during hemiplegic migraines. Why is that. I am not sure if my migraines are considered hemiplegic - my neurologist just listened to my symptoms and told me that they were severe enough they could lead to stroke.
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