back from Nl. He prescribed topomax for the headaches, tremors, and dizziness. He is also sending me to another NL who is more familiar with CM. Will report more on that visit later. He wants me to see Dr. Ong out in Monroeville. Any experiences with him that anyone could share would be great cause from what I recall when I saw him after my fusion well lets say the meds were pretty good and I do not remember much.
As for the topomax, what should I expect? What are your experiences with it.
Topamax is a medication that was developed for Migraines & Neurological Pain. Many doctors combine Neurontin & Topamax for neurologial pain control. It can cause brain fog. Many Dr's and patients say it makes them loose weight. I couldn't take it for very long. I had side effects. It affected my taste buds & I had a metallic taste in my mouth all the time. It was horrible when I tried to eat anything with any fat in it. I do know many people love it. Just track how you feel as far as brain fog & memory loss & word recall. This link has 51 articles about Topamax. Let me know how it works for you.
I am a topamax user! My limbs would feel like they had fallen asleep, causes tingling. Funniest thing that occured that no one told me about was the loss of feeling of fizz. This is rare but I kept sending my soda back for being flat, finally my husband took a sip and informed me that either something was wrong with my noggin or I was crazy.
It was the topamax! LOL So no more pop for me!
I did loose weight and some short term memory. I have a hard time coming up with words during a conversation. I just say I'm having a stupamax moment!
It has helped with a lot of my headaches, so it's worth it to me!
Thank you ladies. I will say that losing some more weight will not hurt me, I would love to lose about another 25 - 30 pounds. The rest of the side effects will even make it harder to see what is doing what to me. Got to love the docs and the meds they give, but hey if ti works, I will be a happy camper. About how long did it take for you to notice the side effects? I know with other meds I tend to notice them very quickly.
If I recall...memory here, lol! I want to say the tingling happens pretty quickly! You may notice your hands and feet feeling like they are asleep within a few days!
I didn't have good luck with Topomax. Also, if you have a history of kidney stones at all I would be cautious. They say there is only a 4% cause of kidney stones but I work in a urology clinic and I have seen lots of stone patients come in on Topomax and that is the first thing our doctors take them off of.
Topamax has helped my headaches. I still get them but not like I used to. Being a non decompressed chiarian 12mm with no syrinx the ns does not want to operate but I find the topamax combined with ibuprofen and I am also on amilitriplyne at night allows me to function. Having said that, still wish there was a better, more effective medication. I don’t want to go down the narcotic path.
Side effects depend on the dosage you're on. The higher the dosage, the more likely you will have side effects. My daughter is on 50 mg at night, and this medication works extremely well for her. Her NL said that 50 mg is a "starter dose". She has been headache and dizziness free after being on the medication for less than one week. The tingling in her hands and face were immediate and have diminished as time went on. Even the distaste for soda has now gone away. What has NOT gone away is the fatigue. This kid naps for hours every day. After a month on Topamax, her doctor tried decreasing the dosage to 25 mg but the headaches returned, so back up to 50 mg she went and feels much better. I hope it works for you!
Joalexa I do know about the loss of words and my thoughts.
Jen Heller said:
Hello!
I am a topamax user! My limbs would feel like they had fallen asleep, causes tingling. Funniest thing that occured that no one told me about was the loss of feeling of fizz. This is rare but I kept sending my soda back for being flat, finally my husband took a sip and informed me that either something was wrong with my noggin or I was crazy.
It was the topamax! LOL So no more pop for me!
I did loose weight and some short term memory. I have a hard time coming up with words during a conversation. I just say I'm having a stupamax moment!
It has helped with a lot of my headaches, so it's worth it to me!
I didn’t get to read everyone else’s posts but I’ve been on topamax for a year now and my biggest problem is forgetting words! I can barely have a conversation lol it’s not so bad because I don’t mind telling people hey I’m on this crazy med, but it does get frustrating!
Doodle I do the same and everyone is understanding! Ive been on topamax since 06! I wish my pop feeling would come back but those nerve still are quiet! Darn!
been on the topomax for several days now.. fortunately no metallic taste on things, but getting very fatigued after doing very little things. Mind fog is getting worse like all of ya'll said. And just thing the NL said he was starting me n the pediatric dose 15 mg 2x/day then on Friday I go to 2 (15 MG) 2x day. can't wait to see what that brings
Thanks for all of your support. all input is greatly appreciated
It took me 8-12 weeks to get adjusted to the topamax but I do believe it was worth it. It made me very sick during those weeks, but if u can hold on I would suggest u do!
I have been using Topamax for about 7 months. My side effects were minimal (mainly just tingling, limbs falling asleep and some memory loss) when I was on 50 mg a day. When I got my doseage upped to 100 mg a day, I began hallucinating and my memory really started to go. I also have an overall "blah" sense about myself now that I didn't used to have. It does not stay with me constantly, but I tend to feel more lethargic and less energetic than usual. My head pain has not gone away, but this medicine makes my pain level tolerable. It also took me about 3 months to notice any real results with my head pain
1. soda and any flavored drinks out - they just taste yucky 2. tremors going don but headaches staying at level trying to get back to NL to see if dosage can be upped
3. fatigue is kicking me in the butte bad, really bad have not felt this bad in a long time
4. more still coming in, got to love chiari
We love you Mike. You & your family is an important part of our CM family. Always remember that!!!
A new Member is looking for NS's in I think Monroeville. I suggested she check with you. I only know NS in Pittsburgh mostly. I even talked to Dr. Aziz last week. I will tell you about that in private, since we both know him.
I was getting the metallic taste on 200mg a day. I really hope Topamax works for you.
When you have the time & are felling well enough let us know how your wife & daughters are doing . I barely made it with one infant & no Chiari Symptoms. I kept and still do ask God why he didn't send me an instruction book when I had Victoria. Just makes since to me.
Remember to check in & know we are always here for you all !!!
Make sure that you get your creatinine and GFR rate checked (kidney function) and minimize the use of NSAID's. While topomax can be effective for miraines - it is rough on the kidneys. If your headaches are from Chiari related CSF pressure, as mine were, the efficacy will be more than likely be minimal. Good luck.