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BRBarb
Hi - I'm new to this board, this is my first post. I'm 48 years old, peri-menopausal, and have had vertigo for 2 1/2 years after a neck injury. It took me 2 years after the injury to finally find a doctor who believed something was actually wrong with me, that I wasn't just a hormonal nut job with psychosomatic symptoms. I was so relieved to finally be taken seriously after seeing so many doctors who would just stare at me after I told them about my vertigo symptoms. He diagnosed me with migraine equivalents, called migraine associated vertigo without headaches. My head starts to pound, my face goes numb and I get vertigo, but my vertigo has been constant for 2 1/2 years. It never goes away. It gets worse when my head pounds and my face goes numb. the doctor put me on a drug called topomax for the migraines. I'm curious if anyone here who gets migraines has tried this drug? The symptoms that I and many other women experience on it seem to be extremely exaggerated menopausal symptoms. I think it messes with hormones. I became depressed, anxious, couldn't sleep, felt like I was going crazy, poor concentration, poor memory, loss of interest in things I love, had acne, headaches and shakiness. Do any of these symptoms sound familiar to anyone here??? (my guess would be yes) In addition to that I developed a cough soon after taking the drug, but never associated it with it until months later when we increased the dose and it got dramatically worse. Now the doctor is treating me like all the other doctors. He does not believe any of my symptoms were from the topomax. I knew he was now questioning my "sanity" so I got copies of all of his notes that he sent my primary doctor - sure enough, he thinks I have somatization - a tendency to experience and communicate somatic distress in response to psychosocial stress and to seek medical help for it - the only thing I've sought medical help for is the vertigo and the neck injury!! Some of the symptoms of somatization are : bloating, pain during menstruation, irregular periods, headaches, tingling, shakiness - do any of THESE symptoms sound familiar to you? (again, I'm sure the answer is yes) I eventually went off it because the cough got so bad and I started having trouble breathing (a side effect many other people experience). The doctor does not believe the drug caused the cough and trouble breathing, so now I'm a nut case with somatization. I also experienced severe pounding heart after I stopped taking it cold turkey (per his instructions) and he doesn't believe THAT was a withdrawal symptom, just somatization I'm sure. Somatization usually has an onset in the 20-30 year old range. Suddenly, I'm peri-menopausal but that's what I have?

When women in their 40's are not taken seriously because everything we experience is thought to be "in our heads," or psychosomatic, how do they expect us to continue to seek out medical care? I am to the point that I don't think I'll ever see a Western medicine doctor again - why bother if this is the response I will always get? I think it's very dangerous of them to dismiss women's complaints. So little is known about menopause among the medical profession, it's ridiculous. If we decide not to go to the doctor because of the way we're treated, eventually some serious consequences will arise and a condition that should have been treated is not caught in time.

My biggest complaint is insomnia - I have been using bio-identical progesterone cream for years and have few other side effects of peri-menopause except the insomnia. I have many remedies, most of them naturopathic, but I also have xanax if it's really bad. I still don't sleep, even with my cal/mag tea, melatonin, gaba and L-theanine. I tried 5-htp with no positive result. Has anyone tried hops? I read that can help?

Anyway, my main reason for posting is about the migraines, and if anyone tried taking topomax for them. But I would also appreciate any tips for helping the insomnia.

Barb

Texasgirl
Barbara,

I'm sorry that you've suffered for so long. It must be horrendous to have to deal with migraines on a daily basis. Topomax is used primarily for epileptic seizures, but I have heard it can also be used for migraines. My youngest daughter was on it for three years as a teenager until she outgrew her epilepsy. She 23 now and seizure-free. The only side effect I remember her having was being tired all the time. It was hard for her to get up and go to school. She eventually got used to it, though.

I want to add that my daughter suffered kidney failure about a year after she stopped taking the Topomax. One of her Dr's (not the one who gave her the topomax), always wondered if the drug dammaged her kidneys, because tests showed no obvious reason. Some drugs are filtered through the kidneys and others are filtered through the liver. Topomax is filtered through the kidneys. She was on dialysis for over a year before a kidney was found for her and she's doing great now. I'm not trying to worry you. As you might guess, I have always wondered about the Topomax.

I hope you get some relief soon. You're in my prayers today. smile.gif
BRBarb
thanks for your reply - the doctor checked my kidneys while I was on the drug and they were okay. However, when we increased the dose, I had to drink so much water to stay hydrated and I rarely had to go to the bathroom. This continued for weeks after I stopped taking it, so I had my kidneys checked again when I visited my endocrinologist for a routine check. He said they were slightly deficient and I should see a kidney specialist, so I faxed the results to the neurologist, only to find out that the results were fine. Not sure why the first doctor did that, but that only added to the neurologist believing I have somatization! Thank you Dr. Endocrinologist! That did not help matters.

Another side effect of topomax is hair loss, also associated with peri-menopause and menopause. Even though I've been off topomax since mid-January I am still losing a lot more than I normally do when I shower, brush my hair and dry it. In addition to that, it's all over the house. One day I got in the hair and there was a hair hanging from my rear view mirror! ohmy.gif Soon I'll be bald! LOL Good thing it grows back and my hair grows very fast.
BRBarb
P.S. I am so sorry about your daughter, thank God they found a kidney for her. How is she doing today?

Thank you for your prayers. I am to the point that I am not sure I believe the vertigo will ever go away. I remained positive and hopeful for so long, but it's getting harder.
BRBarb
and I meant I got in the car, not in the hair! Geeze - my brain and fingers do not always coordinate!
Texasgirl
QUOTE (BRBarb @ Feb 28 2009, 02:12 PM) *
P.S. I am so sorry about your daughter, thank God they found a kidney for her. How is she doing today?

Thank you for your prayers. I am to the point that I am not sure I believe the vertigo will ever go away. I remained positive and hopeful for so long, but it's getting harder.



She's just fine now. She has labs done every six weeks and sees her Nephrologist every two months. She had her two year anniversary of her transplant last October 9th. Thanks for asking. smile.gif
By the way, the donor was a 40 year old man. It was suicide. His organs went to four people, including my daughter. His tragedy was a blessing for our family. I will always be grateful, but sad for his family though.
SKEEWEEAKA
QUOTE (BRBarb @ Feb 28 2009, 02:36 PM) *
Hi - I'm new to this board, this is my first post. I'm 48 years old, peri-menopausal, and have had vertigo for 2 1/2 years after a neck injury. It took me 2 years after the injury to finally find a doctor who believed something was actually wrong with me, that I wasn't just a hormonal nut job with psychosomatic symptoms. I was so relieved to finally be taken seriously after seeing so many doctors who would just stare at me after I told them about my vertigo symptoms. He diagnosed me with migraine equivalents, called migraine associated vertigo without headaches. My head starts to pound, my face goes numb and I get vertigo, but my vertigo has been constant for 2 1/2 years. It never goes away. It gets worse when my head pounds and my face goes numb. the doctor put me on a drug called topomax for the migraines. I'm curious if anyone here who gets migraines has tried this drug? The symptoms that I and many other women experience on it seem to be extremely exaggerated menopausal symptoms. I think it messes with hormones. I became depressed, anxious, couldn't sleep, felt like I was going crazy, poor concentration, poor memory, loss of interest in things I love, had acne, headaches and shakiness. Do any of these symptoms sound familiar to anyone here??? (my guess would be yes) In addition to that I developed a cough soon after taking the drug, but never associated it with it until months later when we increased the dose and it got dramatically worse. Now the doctor is treating me like all the other doctors. He does not believe any of my symptoms were from the topomax. I knew he was now questioning my "sanity" so I got copies of all of his notes that he sent my primary doctor - sure enough, he thinks I have somatization - a tendency to experience and communicate somatic distress in response to psychosocial stress and to seek medical help for it - the only thing I've sought medical help for is the vertigo and the neck injury!! Some of the symptoms of somatization are : bloating, pain during menstruation, irregular periods, headaches, tingling, shakiness - do any of THESE symptoms sound familiar to you? (again, I'm sure the answer is yes) I eventually went off it because the cough got so bad and I started having trouble breathing (a side effect many other people experience). The doctor does not believe the drug caused the cough and trouble breathing, so now I'm a nut case with somatization. I also experienced severe pounding heart after I stopped taking it cold turkey (per his instructions) and he doesn't believe THAT was a withdrawal symptom, just somatization I'm sure. Somatization usually has an onset in the 20-30 year old range. Suddenly, I'm peri-menopausal but that's what I have?

When women in their 40's are not taken seriously because everything we experience is thought to be "in our heads," or psychosomatic, how do they expect us to continue to seek out medical care? I am to the point that I don't think I'll ever see a Western medicine doctor again - why bother if this is the response I will always get? I think it's very dangerous of them to dismiss women's complaints. So little is known about menopause among the medical profession, it's ridiculous. If we decide not to go to the doctor because of the way we're treated, eventually some serious consequences will arise and a condition that should have been treated is not caught in time.

My biggest complaint is insomnia - I have been using bio-identical progesterone cream for years and have few other side effects of peri-menopause except the insomnia. I have many remedies, most of them naturopathic, but I also have xanax if it's really bad. I still don't sleep, even with my cal/mag tea, melatonin, gaba and L-theanine. I tried 5-htp with no positive result. Has anyone tried hops? I read that can help?

Anyway, my main reason for posting is about the migraines, and if anyone tried taking topomax for them. But I would also appreciate any tips for helping the insomnia.

Barb


Hello Barb,

I just wanted to say I took topamax but not for headaches. It did make me worse too...extremely hyper...lost my appetite completely! I could do all things when I was on topamax and unfortunately got into a lot of trouble until I figured out or my mother pointed out that she thought it was the drug!

I agree with you about the doctors, unfortunately most of them just don't have a clue. You, however, are the expert on your body and you are not imagining it!

Best Wishes...

TJ wub.gif
kathleent
Barb,
I just want to say how very very sorry I am that you have had to go through all of these difficult physical challenges and then to be treated so insensivitely on top of that - it's wrong, plain old wrong!!! I'm so sorry!

I had a doctor who made similar notes in my chart - I went back and confronted him 2 years after he wrote them - when they indeed DID find out what was wrong!!!!! I do give him credit - he apologized - as he should have.

I know what it feels like to be dismissed and labeled just because a doctor can't agree or figure it out. As I said to the doctor when I confronted him "I hope this serves as a learning opporutnity for you and the next time a patient comes in and has symptoms that you can't explain/"fix" - it doesn't mean you're a bad doctor and it doens't mean she's making them up. What it means is that it's real and that patient needs a doctor to say "I am so sorry you're expereincing this and even though I don't know what it is, I will be with you as we work to figure this out and help you feel better." THAT is what medicine should be!!!!

And finally, no matter what side effects, etc are listed for a medicine, each of us is a unique individual with unique biology. Trust your gut - if you feel you had side effects from the medicine - you did. It's that simple and should be for the doctor.

Again, I am so sorry you've had to deal with this. Hold your head high, trust your gut and take care of yourself. Feel free to email me anytime if that is helpful to you. kathleent
BRBarb
thank you Kathleen - it's very frustrating to sit in front of a doctor and tell him something and you can tell by the look on their face that they don't believe you or agree with you. If my 15 year old son can go online and within two minutes find out that topomax can cause respiratory problems, I don't understand why the neurologist who prescribed it would not know this or would disagree with it. My son found a message board where people were posting their side effects from topomax and several on the first page alone (total of 650 posts) said they experienced a cough and trouble breathing - but even though I told him this, he just stared at me with a blank look and I knew he didn't believe me. Unfortunately, you can never convince a doctor of something he didn't learn in medical school. I find it frightening that this man is prescribing this drug without knowing all the potential side effects. And you're right, different people have different side effects. I had chemical pneumonia years ago, and that is probably why it happened to me. Apparently it says on a brochure from the pharmaceutical company that you shouldn't give it to people with lung problems or asthma. I am going to try to get a copy of that brochure from my pharmacist.

Thanks for your responses, I appreciate it. I am going to check out the rest of this site, though I have a bad sinus headache today, so I don't think I'll do it today.
SKEEWEEAKA
QUOTE (BRBarb @ Mar 1 2009, 02:17 PM) *
thank you Kathleen - it's very frustrating to sit in front of a doctor and tell him something and you can tell by the look on their face that they don't believe you or agree with you. If my 15 year old son can go online and within two minutes find out that topomax can cause respiratory problems, I don't understand why the neurologist who prescribed it would not know this or would disagree with it. My son found a message board where people were posting their side effects from topomax and several on the first page alone (total of 650 posts) said they experienced a cough and trouble breathing - but even though I told him this, he just stared at me with a blank look and I knew he didn't believe me. Unfortunately, you can never convince a doctor of something he didn't learn in medical school. I find it frightening that this man is prescribing this drug without knowing all the potential side effects. And you're right, different people have different side effects. I had chemical pneumonia years ago, and that is probably why it happened to me. Apparently it says on a brochure from the pharmaceutical company that you shouldn't give it to people with lung problems or asthma. I am going to try to get a copy of that brochure from my pharmacist.

Thanks for your responses, I appreciate it. I am going to check out the rest of this site, though I have a bad sinus headache today, so I don't think I'll do it today.


Barb, unfortunately as I suggested, some doctors prescribe away and do not pay attention what the contraindications are and what your history is... My doctor who I have seen regularly for the past 8 years knew that I had serotonin toxicity and seizures and coma as a result of some meds... She, however, continued to prescribe medications that COULD POSSIBLY CAUSE SEIZURES. When I would call her on it she simply told me that I should stop looking up the medications!!! ohmy.gif Now help me out here, I almost died from these medications and you are telling me that I should not look up the contraindications, at that point I decided she is not looking out for my best interests and I am not taking any more of her RECOMMENDATIONS! wink.gif

Best Wishes...

TJ wub.gif
BRBarb
that's extremely irresponsible of your doctor - I have learned to trust my gut and get off a drug when I realize it's not right for me. One drug I was on years ago really wreaked havoc in my life, and I think it shot my nerves. I also have odd reactions to drugs, though thankfully, nothing life threatening. I told the neurologist this before he prescribed the Topomax. Since one of the side effects is moodiness, I'm shocked that he did not notice or comment on the fact that my mood went downhill drastically while I was on it. When I told him that I had insomnia, he just asked what time I go to bed, and then said "so you wake up at 3:00 and never get back to sleep?" That was that. When I was so depressed in December, he never commented on it. It was the next appointment in January that his chart notes said he thought I had a somatization disorder. He'd only seen me about 5 times at that point. A total of about 90 minutes, if that. The notes said I should discuss my "other illnesses" with a psychiatrist. I don't HAVE any other illnesses (except hypothyroid, but what's to discuss?) I'm embarrassed to see him again, though I'm not the one who should be embarrassed. He certainly won't be, since I'm sure he's convinced that my reaction when we increased the dose, and then the subsequent withdrawal, were all "somatization." I had planned to see a cardiologist just to be checked out because of family history. He probably has decided I thought I had a heart problem. I doubt I will be able to convince him otherwise. My son sees him for migraines as well, I'm not sure what to do about that.
SKEEWEEAKA
QUOTE (BRBarb @ Mar 2 2009, 12:01 AM) *
that's extremely irresponsible of your doctor - I have learned to trust my gut and get off a drug when I realize it's not right for me. One drug I was on years ago really wreaked havoc in my life, and I think it shot my nerves. I also have odd reactions to drugs, though thankfully, nothing life threatening. I told the neurologist this before he prescribed the Topomax. Since one of the side effects is moodiness, I'm shocked that he did not notice or comment on the fact that my mood went downhill drastically while I was on it. When I told him that I had insomnia, he just asked what time I go to bed, and then said "so you wake up at 3:00 and never get back to sleep?" That was that. When I was so depressed in December, he never commented on it. It was the next appointment in January that his chart notes said he thought I had a somatization disorder. He'd only seen me about 5 times at that point. A total of about 90 minutes, if that. The notes said I should discuss my "other illnesses" with a psychiatrist. I don't HAVE any other illnesses (except hypothyroid, but what's to discuss?) I'm embarrassed to see him again, though I'm not the one who should be embarrassed. He certainly won't be, since I'm sure he's convinced that my reaction when we increased the dose, and then the subsequent withdrawal, were all "somatization." I had planned to see a cardiologist just to be checked out because of family history. He probably has decided I thought I had a heart problem. I doubt I will be able to convince him otherwise. My son sees him for migraines as well, I'm not sure what to do about that.


Well, I don't see the doctor who was prescribing me the meds with seizures as contraindication... I understand it can be difficult because your son sees him, but I do feel that it was irresponsible but typical unfortunately.

Good luck on your decision.

TJ wub.gif
BRBarb
I spoke to my doctor today who disagrees completely with the neurologist's assessment that I have somatization, and he has urged me to stop seeing him - he pretty much called him a quack. He said he definitely would have said something to me if he had thought that was true. I have been seeing this doctor for three years, and my primary doctor for 14 years - they both seem to have the same opinion of the neurologist. I called to cancel my son's appointment for tomorrow - unfortunately the receptionist is not in today so I couldn't leave my message with her that I will not be coming back. Darn! I was really looking forward to that. LOL
Mopsy3
QUOTE (BRBarb @ Feb 28 2009, 02:36 PM) *
Hi - I'm new to this board, this is my first post. I'm 48 years old, peri-menopausal, and have had vertigo for 2 1/2 years after a neck injury. It took me 2 years after the injury to finally find a doctor who believed something was actually wrong with me, that I wasn't just a hormonal nut job with psychosomatic symptoms. I was so relieved to finally be taken seriously after seeing so many doctors who would just stare at me after I told them about my vertigo symptoms. He diagnosed me with migraine equivalents, called migraine associated vertigo without headaches. My head starts to pound, my face goes numb and I get vertigo, but my vertigo has been constant for 2 1/2 years. It never goes away. It gets worse when my head pounds and my face goes numb. the doctor put me on a drug called topomax for the migraines. I'm curious if anyone here who gets migraines has tried this drug? The symptoms that I and many other women experience on it seem to be extremely exaggerated menopausal symptoms. I think it messes with hormones. I became depressed, anxious, couldn't sleep, felt like I was going crazy, poor concentration, poor memory, loss of interest in things I love, had acne, headaches and shakiness. Do any of these symptoms sound familiar to anyone here??? (my guess would be yes) In addition to that I developed a cough soon after taking the drug, but never associated it with it until months later when we increased the dose and it got dramatically worse. Now the doctor is treating me like all the other doctors. He does not believe any of my symptoms were from the topomax. I knew he was now questioning my "sanity" so I got copies of all of his notes that he sent my primary doctor - sure enough, he thinks I have somatization - a tendency to experience and communicate somatic distress in response to psychosocial stress and to seek medical help for it - the only thing I've sought medical help for is the vertigo and the neck injury!! Some of the symptoms of somatization are : bloating, pain during menstruation, irregular periods, headaches, tingling, shakiness - do any of THESE symptoms sound familiar to you? (again, I'm sure the answer is yes) I eventually went off it because the cough got so bad and I started having trouble breathing (a side effect many other people experience). The doctor does not believe the drug caused the cough and trouble breathing, so now I'm a nut case with somatization. I also experienced severe pounding heart after I stopped taking it cold turkey (per his instructions) and he doesn't believe THAT was a withdrawal symptom, just somatization I'm sure. Somatization usually has an onset in the 20-30 year old range. Suddenly, I'm peri-menopausal but that's what I have?

When women in their 40's are not taken seriously because everything we experience is thought to be "in our heads," or psychosomatic, how do they expect us to continue to seek out medical care? I am to the point that I don't think I'll ever see a Western medicine doctor again - why bother if this is the response I will always get? I think it's very dangerous of them to dismiss women's complaints. So little is known about menopause among the medical profession, it's ridiculous. If we decide not to go to the doctor because of the way we're treated, eventually some serious consequences will arise and a condition that should have been treated is not caught in time.

My biggest complaint is insomnia - I have been using bio-identical progesterone cream for years and have few other side effects of peri-menopause except the insomnia. I have many remedies, most of them naturopathic, but I also have xanax if it's really bad. I still don't sleep, even with my cal/mag tea, melatonin, gaba and L-theanine. I tried 5-htp with no positive result. Has anyone tried hops? I read that can help?

Anyway, my main reason for posting is about the migraines, and if anyone tried taking topomax for them. But I would also appreciate any tips for helping the insomnia.

Barb


Hi Barb:

I am sorry about your doctor experience. It sounds like a horrible one and not unknown to us women going through this. I too had trouble with finding a good doctor. I finally found a nurse practitioner that I go to for my OB appointments. She is great and she will listen and she is also into natural meds along with reg. meds. It took me a long time to find her and I really like how you explained how you felt. I felt like that too.

I too had migraines but it seems the natural proget cream worked for mine. I don't think I have taken topomax. I did take something else for awhile for my migraines but it was so expensive and raised my blood pressure and heart rate up so I just stopped using it and went with the natural progest cream. Now, the cream works most of the time but I still might get a migraine once in a while. When I do, they are much less severe than what they were before (because of the cream). I really feel for you as I know the pain involved.

Take care

Mopsy
SKEEWEEAKA
QUOTE (BRBarb @ Mar 2 2009, 05:54 PM) *
I spoke to my doctor today who disagrees completely with the neurologist's assessment that I have somatization, and he has urged me to stop seeing him - he pretty much called him a quack. He said he definitely would have said something to me if he had thought that was true. I have been seeing this doctor for three years, and my primary doctor for 14 years - they both seem to have the same opinion of the neurologist. I called to cancel my son's appointment for tomorrow - unfortunately the receptionist is not in today so I couldn't leave my message with her that I will not be coming back. Darn! I was really looking forward to that. LOL


Congratulations, Hallelujah!!! One less QUACK to deal with! Now that's what I call empowering YOURSELF! biggrin.gif

Onward and upward...


TJ wub.gif
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