Migraines+DS+Topamax?

buffalobillsfan
on 8/25/11 5:19 am - CA
I found that many OB-Gyn's aren't really current on the hormone balancing and the bioidentical hormones.  It can be hard to find someone who excels.  Their level of care will set the stage for your happiness and comfort.  I am lucky to have found a Nurse Practicioner who has done nothing but hormones for 15 years.  I am so glad I didn't find someone who either brushed me off or put me on synthetic hormones.  Just my opinion though.  Definitely track symptoms and start, stop dates and amount of flow.  Breast tenderness, headaches, spotting, depression, moodiness, acne, hot flashes, trouble sleeping, vaginal dryness are all in the equation.  Testosterone levels can cause muscle loss, abdominal fat, etc.  So facsinating!!!!!  Let me know if you find a connection between the progesterone and headaches.   

                   
                                                             

Julie R.
on 8/25/11 6:20 am - Ludington, MI
 I certainly will.   I know that just this simple progesterone (It's called Progesta Care Plus) really helped.    Even though I've never been tested, all of the reading I'd done really pointed to the fact that I was estrogen dominant, and had been for all of my adult life.     When my doc put me on BC pills to help with my mid-cycle and PMS symptoms a couple of years ago, it REALLY became obvious immediately that I had an estrogen dominance issue - terrible headaches, heart palpitations, anxiety and bizarre dreams.   I have always considered myself a really emotionally grounded person, and let me tell you, that blew me away.   As soon as I went on the Progesta, things smoothed right out.     So, I have my new tube right next to my bed now, LOL.
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125

michellemj
on 8/24/11 5:24 am
While I'm not a DSer, I am a chronic daily migrainer and I take Topamax. The cognitive stuff is sucky and really doesn't go away (I've been on the drug for about 3 years). It is dose dependent though so depending on your dose, you may not have issues. For me, I have issues with word finding all the time. Someone else mentioned the tingly limb thing. That is most noticeable in the beginning when you are ramping up the dose and should go away with time. Every once and a while though it might reappear.

As an aside, Topamax kills your B12 and Folate levels. Shouldn't be an issue as you supplement with those already as a DSer, but you may need to keep an eye on it just to make sure.

And if you can get Botox again, do it! As a scientist I was highly skeptical, but it has made a world of difference in my life and I'm now attempting to taper off my Topamax cuz I just hate the cognitive side effects. My insurance actually fully covers it as it is now FDA approved for migraines...

Good luck and I hope you get some relief!

HW: 280; SW: 255; GW1: 150; CW: 155.

Julie R.
on 8/24/11 7:52 am - Ludington, MI
Thanks, Michelle, for your input.    I am supposed to start on 25 mg twice a day.    So you like the Botox?    Are you seeing a neuruologist for injections?  How often?

I had figured that'd be my next course of action, but as I mentioned in one response, I think I'm going to try being faithful to the hormone cream I'd been using for a month, and see how many migraines I get, before going the Topamax route.   I've already filled the script, so it will be waiting for me if I need it.   
Julie R - Ludington, Michigan
Duodenal Switch 08/09/06 - Dr. Paul Kemmeter, Grand Rapids, Michigan
HW: 282 - 5'4"
SW: 268
GW: 135
CW: 125

michellemj
on 8/24/11 9:40 am
25mg twice a day is a good place to start. Hopefully that will keep the side effects to a minimum. I was at 150mg a day and I've now backed down to 100mg.

My neurologist does the Botox and he has found that every 10 weeks is ideal to keep the migraines at bay. For me, it took about 10 days to get full relief (the toxin takes a few days to do its thing) and I noticed the migraines return after 11ish weeks and were back at full force by week 12. I waited too long between appointments because I'm an idiot, but given my background, I wanted to do an experiment and see how long it really lasts! It's quite amazing and I've gone from a chronic daily headache to maybe one every 6 weeks and it has the pleasant side effect of wrinkle elimination. :)

My migraines are also hormone related as they become super intense right around my period. My neurologist thought my BC was contributing to them so I went off of the BC for 3 months and nearly died as I had horrible migraines when I was ovulating and when I had my period...so basically almost the entire month. I obviously need oral hormones to keep my menstrual migraines in check and I now take Seasonique, that BC that you only get your period 4 times a year, so I can eliminate hormone fluctuations. It's possible that hormone cream may indeed solve your problems and you can avoid the Topamax.

HW: 280; SW: 255; GW1: 150; CW: 155.

rbb825
on 8/24/11 5:26 pm - Suffern, NY
Where did you hear that topamax kills your b12 and folate levels?  I have been on it for years and my folate levels have always been high even preop.  I can't judge my B12 since I have been on injections but my levels never went down when I went on the topamax.

Topamax does block vitamin A absorbtion but never heard folate or b12.

 

southernlady5464
on 8/24/11 9:13 pm
Well,, I CAN speak to the B12 issue....mine is well over 2000 for several years and I've been on topamax for as long or longer...I would have seen a drop in B12 by now if that were true.

As to the vit A...my A is also in the top part of the range. And I take the topamax at the same time I take the A. So it may be a case of YMMV on some of this.

Liz

Duodenal Switch (Lap) 01-24-11 | Surgeon: Stephen Boyce | High weight: 250 in 2002 | Surgery weight: 203 | Lowest weight: 121 | Current weight: 135 | Goal weight: 135






   

michellemj
on 8/24/11 9:31 pm, edited 8/24/11 9:38 pm
A study was published early this year that looked at all antiepileptics (which Topamax is) and folate/B12 levels. For the most part, all of them greatly reduced B12 levels (mean levels around 300-400, which we know is drastically low). Folate levels varied with the drug, but levels were around 5, and these levels were lower than untreated controls and healthy subjects.

As an aside, I know that Topamax now has a warning (though I don't think it has reached "black box" status yet) that women of childbearing years are highly encouraged on birth control if they are on the med as it has been associated with birth defects. When I asked my neurologist if that was because it affects the folate levels and therefore leads to neural tube defects, he said that was the most likely cause, but no formal studies had been done yet.

Here's the abstract of the study and I can provide the full article if you are interested!

Ann Neurol. 2011 Feb;69(2):352-9. doi: 10.1002/ana.22229. Epub 2011 Jan 19.

Antiepileptic drugs interact with folate and vitamin B12 serum levels.

Linnebank M, Moskau S, Semmler A, Widman G, Stoffel-Wagner B, Weller M, Elger CE.

Source

Department of Neurology, University Hospital Zurich, Switzerland. [email protected]

Abstract

OBJECTIVE:

Antiepileptic drugs (AEDs) are important for the treatment of epilepsy, psychiatric diseases, and pain syndromes. Small studies have suggested that AED treatment reduces serum levels of folate and vitamin B12.

METHODS:

This prospective monocenter study aimed at testing the hypothesis that AED treatment is associated with folate and vitamin B12 serum levels in a large population. A total of 2730 AED-treated and 170 untreated patients with epilepsy and 200 healthy individuals were enrolled.

RESULTS:

Treatment with carbamazepine, gabapentin, oxcarbazepine, phenytoin, primidone, or valproate was associated with lower mean serum folate levels or with a higher frequency of folate levels below the reference range in comparison with the entire group of patients, untreated patients, or controls. Treatment with phenobarbital, pregabalin, primidone, or topiramate was associated with lower vitamin B12 levels compared with the entire group of patients. Vitamin B12 serum levels were higher in patients treated with valproate compared with the entire group of patients, untreated patients, and healthy controls. Folate or vitamin B12 levels below the reference range were associated with higher mean corpuscular volume (MCV) and higher homocysteine plasma levels. Vitamin substitution for 3 months in 141 patients with folate or vitamin B12 levels below the reference range yielded normal vitamin levels in 95% of the supplemented patients and reduced MCV and homocysteine plasma levels.

INTERPRETATION:

Treatment with most of the commonly used AEDs is associated with reduced folate or vitamin B12 serum levels and is a risk factor for hyperhomocysteinemia. Oral substitution is effective to restore vitamin, MCV, and homocysteine levels.


HW: 280; SW: 255; GW1: 150; CW: 155.

southernlady5464
on 8/24/11 6:08 am
Julie, I've been using Topamax for almost 9 years now...mine is not for migraines tho, it also has been used for pain control in Peripheral Neuropathy. Prior to Topamax, I was on Neurontin and that was the time frame I gained over 50 lbs...going on Topamax did help me lose weight but not enough to no longer be MO...I went from 245/255 (not sure of my highest) to 200/210 depending on the year.

In the grand scheme of those type meds, it has very little "fuzzy" effect...compared to many others. I am far less fuzzy on Topamax than I ever was on meds like Neurontin, and some of the others they tried on me.

I'll probably take Topamax the rest of my life as it keeps the pain in control.

Liz

Duodenal Switch (Lap) 01-24-11 | Surgeon: Stephen Boyce | High weight: 250 in 2002 | Surgery weight: 203 | Lowest weight: 121 | Current weight: 135 | Goal weight: 135






   

Chellie
on 8/24/11 7:03 am - PA
Hi Julie .... Not much I can add to what everyone else has said, so I'll be part of the chorus....

I've been on topomax for about 5 years...prior to that I had migraines several times a month that lasted days at a time that were so painful that I could do nothing but cry and try and sleep them away.

I have now titrated up to 150mg twice a day and have about two migraines a month that require Imitrex shots to control... and will need to go to the ER about 3-4 times a year .... A major decrease from what was. Though my migraines come from a family history and not hormones, I am glad from what ever relief I get.

Side effects for me include the tingling if i miss doses and need to restart .... huge problems with word finding and when in an attach... talking... hate sounding like an idiot... never was able to lose weight with topomax....but never gained either ...so no hard feelings either way.

Overall my quality of life is much improved with the topomax, I'd be so afraid to try and titrate down my dosage... only because of the pain associated with the severe migraines... when I've had to take topomax, imitrex, and lorcet to control migraine pain... I'd rather stay at know levels than mess with sucess....

Best of luck....I know it's difficult, but I would rather deal with the side effects (even as a teacher myself... I explained to my supervisor and parents I worked with ...as needed ... what was causing the verbal mishaps while adjusting....I did find while the word stuff doesnt go away, it does settle after the initial dosage adjustment.... and for me I have problems speaking when I get the migraines themselves anyway.)  We all so vary.

Take Care
Chellie
HW-525/RevW-409/GW- 200/CW-177...
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