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» LymeNet Flash » Questions and Discussion » Medical Questions » Topamax anyone?

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Author Topic: Topamax anyone?
mimi
LymeNet Contributor
Member # 6680

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I hope you all are well! I went to see Dr. J

today and he changed my abx. and put me on

topomax for migraines and weight gain upi to

60lbs. in a year and 5 montths. I just picked it

upi and it is for seizures and has a ton of bad

side effects. Anyone that has any info. please

help before I begin to take this.
Thanks,
mimi

Posts: 343 | From usa | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
mlkeen
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My only experience with Topamax is with a day care child with seizures. It worked well for him.

I remember reading a few months ago that migraines were connected to a vitamin or mineral deficiency.

If I have time I'll try to do research, but we have no school again tomorrow and I have a full house! again!

Mel

Posts: 1572 | From Pa | Registered: Jun 2001  |  IP: Logged | Report this post to a Moderator
imanurse
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[ 01. June 2006, 02:46 AM: Message edited by: imanurse ]

--------------------
**Eat Chocolate**

Posts: 942 | From USA | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
mimi
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Mlkeen, thanks for the help. I would love to know the vitamin def. for migraines. thanks


imanurse: Thanks for the information! I know my hormones are the cause of my weight gain and migraines it is all a cycle. I have had endometriosis for years and lately the pain is severe. I think If I could get someone to help me with the hormones I would feel much better. Thanks I will keep trying to find someone! Thanks again!
mimi

Posts: 343 | From usa | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
mlkeen
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Hi Mimi-
What do you know, it's magnesium. I did see a blurb, but only one place, that mentioned too much iron or copper can cause migraines too. But since we are prone to mag deficeincy anyway it is worth a shot. Apparently mag keeps the blood vessels in the brain from having spasms and causing pain.

I read something by Marnie recently that talked about taking 6 small doses of mag with B1 and selenium daily. It seems to me I linked there from a post.

MAGNESIUM
The third most abundant mineral in the human body. Seventy percent of it is located in bone, and it is essential for healthy bones and teeth. It is also critical for maintenance of cell membrane potential and works very synergistically with the amino acid, taurine. It is involved in maintaining nerve-muscle interaction. It regulates heartbeat. It helps utilize B complex and Vitamin C and E, bone growth, and the function of all muscles, especially including the heart. It appears to be associated with the regulation of body temperature, and is essential for conversion of blood glucose into energy. Is also of benefit in migraine headaches, epilepsy, and muscle spasms. The single most important and most common mineral deficiency is probably magnesium.

This mineral assists in all of the body's energy reactions. Deficiency can result in depressive symptoms, along with confusion, agitation, anxiety, and hallucinations, as well as a variety of physical problems. Most diets do not include enough magnesium, and stress also contributes to magnesium depletion. Other possible reasons for a deficiency include kidney or parathyroid disease, high blood pressure, chronic fluid loss, alcoholism, and malabsorption disorders. Several studies have shown that magnesium injections can bring relief from symptoms such as fatigue, aches and pains, weakness, and lethargy. I frequently give magnesium shots for migraine headaches, PMS, and allergies. A daily maintenance dose is 400 to 800 mg, with more needed to correct deficiencies.

MAGNESIUM: WHY IT IS IMPORTANT TO YOUR HEALTH

Magnesium deficiency is one of the most common problems that we encounter in patients in this country. At least 70% of men and 80% of women do not consume enough magnesium in their diets to maintain normal levels. Magnesium is an essential component of protein synthesis in the body. It is important in the proper functioning of all muscles, including the heart.

There are many factors that prevent the body from absorbing magnesium:
Relatively high calcium intact (dairy products)
High phosphate intake (meats, pop)
High intakes of sodium, protein, and fat
High vitamin D intake
High phytase intake (whole wheat products)
High potassium intake
Alcohol
Sugar
Caffeine
Stress also significantly increases excretion of magnesium from the body, leading to deficiency.

Illnesses associated with magnesium deficiency include:
Anxiety
Cardiac arrhythmia
Chronic and acute pain
Depression
Epilepsy
Hypertension
Immune dysfunction
Muscle tension
Myocardial infarction
Possible TIA�s and strokes

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arg82
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I am on Topamax for migraines caused by Lyme. The Topamax has helped the migraines a lot (I've been dealing with the migraines for 8+ years since my diagnosis), mainly prevented me from having a week-long migraine once a month.

I've had some problems with the side effects and not been able to tolerate the dosage that would have probably best helped me because I had tingling and numbness in my hands and feet (definitely from the Topamax, not Lyme).

But for me it's been great. For other people I know it's not the best drug so read up on it, talk to people and don't take anything you're not comfortable with.

If you have any questions I might be able to answer, feel free to ask!

Peace and healing,
Annie

--------------------
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Lyme Out Retreats

My Lyme Journal

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Michelle M
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Hi Mimi.

I have been on Topamax for about a year for headaches.

I do not need to lose any weight; however, I lost about 10 pounds, anyway, and that was all. I've seen others lose an impressive amount of weight on it almost effortlessly.

A nice side effect is sound sleep -- though I have always slept like the dead anyway. I take it at bedtime.

Dosage adjustments should be made in very small increments over time (i.e., adjust up or down by 25 mg only, and take a week or two to do it). You might have some moodiness or snappishness, but it passes.

I think some people report word-retrieval problems using it; however, for us Lymies that might be hard to distinguish from the norm.

Headaches are definitely worse without it.

I would definitely give it a try. In a year, for me at least, side effects have been negligible, headache reduction benefits significant.

Michelle

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lymiebabe
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Hi Mimi -

Life is serendipidous! I was coming to post a question I have regarding Lyme, neuro drugs, gut pain, and migraines, and there was your Topamax question. I will try to answer your question, and will also hope someone may have some help for me as well. I apologize to everyone up front that this is soooo long, but I don't know how to give you the story without all these parts.


I took Topomax for 4 years. I started it for what they thought was Bipolar disease, which is now assumed to be from Lyme/co-infections, and later took it for migraines. It also was extremely helpful for the fatigue (which at that time was diagnosed as CFIDS/Fibromyalgia). It took me from non-functional to able to hike 3 miles 3x per week, and totally got rid of my migraines at high enough doses.


Background - I never had a migraine until 4 months after I first got sick w/ Lyme, although Lyme was not diagnosed for 15 years. Once migraines started, I had them up to 4 times a week. Tried lots of things, but nothing helped. (Note: since I started abx therapy 3 months ago, I have migraines almost every day.) Also, like you - I have hormone issues - see below. I did not have severe mania/depression mood swings until 1995, 5 years after I got Lyme.)


Topamax was the chosen drug because I had tried Lithium, Depakote, and Neuontin, as well as the tricyclic antidepressants and SSRI's, calcium channel blockers, and some other edgier stuff, and none worked very well or did anything for the migraines, bipolar, or other ``chronic fatigue'' symptoms, and in the 3 years of trying these other drugs, I'd gained over 50 pounds. I am 5'3'' and topped out at 170.


Topamax was a lifesaver at first for me, and it helped so many things, I really wish I could still take it. At lower dose, 100 mg/day, my mood leveled off and my manias and suicidal tendencies all but disappeared. When they started using it for migraines, we upped my dose to 175 mg. At 200 mg, my migraines disappeared. In the first year on Topamax, I lost all the weight I had gained and was back down to my normal 115 lbs.


That's the good part. Now - the rest of the story, (and please, if anyone has any ideas, please respond). By the beginning of year 3 on Topamax, I was starting to have weird stomach pain and the feeling that my gut was being wrung out like a wet rag while acid was poured over it. (Same as today....) I started to lose more weight, and got down to my favorite, 102 lbs.


At the same time, through careful symptom data analysis, we discovered I was allergic to my own progesterone (as well as any other source,) - cyclicly and upon ingestion of progesterone, I would flip into a manic tailspin, only to bottom out several days later, several thousand dollars poorer. I had a complete hysterectomy at 39, because we thought getting rid of my progesterone would stop the ``chronic fatigue/Fibromyalgia'' symptoms and bipolar. At that point I was taking 225 mg per day of Topamax.

Less than 48 hours after the surgery, I blew up to the point where it looked like I was about 10 months pregnant with large twin. My gut was so swollen that my chest was pushing on my chin, and it was nearly impossible to breath. I came down with pneumonia, but the doctors could not understand what was happening to me to make me blow up as I did. I have never experienced pain like that in all my life, and I live with pain every day. This was incredible. I was throwing up and having diarrhea at the same time for several days constantly. Now, in retrospect, the doctor thinks what happened was a result of having Lyme disease.


By the end of 6 days, I was clearly dying, and IV antibiotics, antivirals, and antifungals only seemed to make me worse. Emergency surgery was performed; when they opened me up my entire gut cavity was rotting and full of pus (they said the stench was incredible). I lost several organs to infection, and they took out, cleaned, and put back my GI tract 4 times. They found fecal matter and a ton of yeast and vaginal bacteria in my gut and GI tract. When I came to, a couple weeks later, I was still in a lot of GI pain, but my white blood counts were normalizing.

All together, I was in the hospital for about a month, on a ton of IV antibiotics, antivirals, and antifungals, both before and after the surgeries, and was fed through IV. After I went home, I was unable to even get out of bed without help for a couple weeks. My gut started to swell WAY up again on several occasions, but again, they could find no cause. All the while, my gut pain kept getting worse, and I was losing more and more weight. From August 2003 through January 2004, I looked as though I was about 5-7 months pregnant, and kept losing weight.

I was in and out of the hospital several more times during those 5 months, and eventually bottomed out at about 85 pounds. At times they suspected colon cancer and Chrone's disease, and I was put on high doses of Prednisone. When they couldn't find anything wrong with my gut, they first said it was psychosomatc, then suggested that I was anorexic (some weird sort of Munchenhaussen syndrome, I suppose). The final diagnosis was ``malabsorbtion syndrome''. It quite literally nearly killed me.

In January 2004, I checked into UNM Hospital for a week, had over 16 specialists, every test they could think of (still, no Lyme tests,) ate 4000+ calories a day of a Macrobiotic, sugarfree diet, and still they could not find anything wrong. It occurred to me then that every time over the past 2 years that my gut had gotten worse coincided with an increase in my Topamax dose. When I suggested it to the UNM docs, they said it was totally impossible that Topamax was the cause. They told me to go home, write my will, and pray.

I went home, talked to my pharmacologist, and decided to wean off the Topamax. Within 24 hours of halving my dose, my gut started to feel much better and the swelling receded. Within 8 days, I had gained back 20 pounds and had NO pain. However, ever since then, I have had terrible gut reactions to most medications that affect neurotransmitters in any way. I have tried over 35 medications, all of which either cause the same gut problem, or I gain 10 pounds a week until I stop taking whatever it is. Most recently I tried Aricept and within a couple days, had the same gut pain. No one has ever been able to figure out why this happens, or how my body is being affected.

So Mimi - I don't know if taking the Topamax for those 4 years caused some weird permanent damage to my gut so that now I cannot tolerate so many medications, or if it is because of the Lyme disease, or how the two issues interact. Topamax can be great, and as I said, if it weren't for my gut pain, I would still really like to be taking it. So - good luck with your decision. A good place to look regarding neurotransmitter drugs or psychotropics is crazymeds.org. (BTW - the nickname for Topamax in the psych world is ``dopamax'' and ``the super model drug'' - because it can slow your synaptic firing to the point where you'll be dumber than a box of rocks, but you will be skinny as a super model!)

As for me - I'm going to post the rest of the story and my questions in a separate thread, but I hope that it is of help to you, and that if anyone else knows about this kind of reaction with Topamax, that they will speak up. (Feel free to write me at my email address, since I don't always check threads often b/c of my reading issue.)

--------------------
Forgiveness is the fragrance that the violet sheds on the heal that has crushed it. (Mark Twain)

"It's only after you've lost everything," ... "that you're free to do anything." (Chuck Palahniuk, Fight Club)

Posts: 24 | From somewhere outside Boston, MA | Registered: Feb 2006  |  IP: Logged | Report this post to a Moderator
   

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