So, back to my kitchen table, full of medications. My new neurologist at the Headache Clinic gave me so many medications that I had to organize them on my table and write when I take each on sticky notes.
First of all, she had me stop taking the natural progesterone. She said that the progesterone wouldn't help my headaches and wouldn't help me get a regular menstrual cycle either. So I took that for a total of 4 nights before stopping. She also wants me to eventually stop the Butalbital (Fioricet), even though I don't take it much. That has been my "emergency" drug for the especially awful migraines.
So here's what she put me on:
* Zolpidem Tartrate (generic Ambien) - I had to try it for five nights to see if I woke up refreshed. If I did, I could cancel my sleep study. I didn't even notice any difference. Sleep study is Monday night. No more Ambien.
* Frova - this is a typical migraine med that you take as needed. I've taken it in the past and it made my migraines worse. I told my neuro this and she said to try it again. She had me take it about 1 1/2 weeks straight to knock out my headache cycle; however, my insurance only covered four pills, so I wasn't able to do that. The whole time I did take it though, I had a headache, but I was also on my first real period in two years (since I got the IUD out) so that could have been it. Anyway, no more Frova.
* Lexapro - An antidepressant. I've been on this before also (see the Lexapro tag in my blog if you want to know more), and I also told my neuro that, but she wanted to try it on me again. Interestingly enough, I just read my old blog posts and realized a side effect was crazy break-your-jaw-type yawning. So that's why I've started yawning like that again!
* Sumatriptan (generic Imitrex) - I've tried Imitrex before, same effects as Frova. My insurance also only covered four pills of this. I haven't taken it yet, but this is what I'm supposed to take when I have a migraine.
* Nuva Ring - A synthetic hormone birth control. After all my posts on natural hormones, I'm obviously not thrilled about this. However, my neuro wants me to be on this 12 weeks straight and then take a week break and use estrogen patches that week. I've tried taking The Pill with no breaks before and had a lot of spotting and still had headaches, but my neuro said the Nuva Ring will be different.
* Emergency concoction: Ketorolac (Toradol), Promethazine (Phenergan), and Seroquel - I combine these three pills if I have an unbearable migraine. My neuro said this is like going to the emergency room and getting a shot. It will knock me out, and I can't do it more than twice a month. These scare me so I haven't done this yet.
* Magnesium Potassium Aspartate - I found this at a vitamin store. I'm to take 400-500mg, but the bottle I found is 600 mg for a 2-pill dose, so I take one pill and figure 300mg is enough. I stopped it for a while because I was having stomach issues, but then I realized it was a stomach bug (I had a fever and it's going around) so I've started it again.
I don't take my neurologist's recommendations lightly. That's why I'm agreeing to take these meds. I don't want to sound like I think I'm smarter than her, because I don't. And I was happy with the appointment. However, I think after trying some of these meds before and seeing so many neuros, I'm having negative thoughts about the whole thing. I'm trying my best to push them aside, and I hope this post doesn't come across as negative.
I've had a lot of headaches lately. I have a dilemma where I try to see if it will pass, and then it gets bad and by that time it's too late to take the Imitrex; I can take Aleve but that doesn't always work either. My neuro said not to take more than 2 Imitrexs a week or more than 2 Aleves a week. So I've been suffering through a lot of headaches. But I was doing that before as well, to avoid rebound headaches.
My next post should be cool, and helpful. I'm going to write about my sleep study experience (and results if I get them that soon). Also, I'm going to post some good sleep habit tips from my neurologist. Speaking of results, tomorrow I'm going to call my old/other neuro about the blood tests I had, so if I find out anything interesting, I'll post that as well.
Have an awesome, headache-free weekend!
Thursday, February 26, 2009
Friday, February 20, 2009
New Headache Clinic Visit Part 1
My kitchen table is covered with papers and pill bottles. I had my initial visit at the new Headache Clinic this past week, and my headache regimen has been completely altered.
First a little bit about the appointment. It was at a hospital and was a really big new building. I met with the neurologist and another doctor/neuro (an intern I guess), both women, for an hour and a half. There were three parts. The first part was an interview that covered everything about my medical history, emotional state and of course all aspects of my headaches. The second part was a physical exam. The only thing odd they noticed was something about my throat - they said they couldn't see it. The third part was developing a game plan to fight the headaches. Then at the very end, I went to a separate part of the hospital to get my iron level tested (and one other thing I can't remember). Because they drew blood in the same vein as last week, the vein collapsed and it left a nasty mark and I haven't been able to lift anything with my right arm.
My neurologist diagnosed me with "chronic migraine" - she said that what I'm having is migraines, but some are worse than others. She thinks I have a sleep problem, and that's why I'm getting the headaches. I don't have trouble falling asleep, and I don't usually wake up much in the middle of the night, so I had always assumed my sleep was fine. However, I'm always tired, and no matter how much sleep I get, I never wake up feeling refreshed. My dad has sleep apnea, which can be hereditary, and I apparently have a throat issue... Sleep apnea is common in overweight men, but me?? The neuro told me that it's not a well-known fact, but it's also possible for tall, thin women (like me) to have sleep apnea.
Side note, I learned that apparently it's common for kids who sleepwalk to later develop migraines - and I sleepwalked a lot as a kid.
My neurologist also thinks that, based on my answers to the emotional questions, I have low serotonin and one other thing that, of course, I can't remember. Sorry. It was information overload!
So, for the game plan, including my laundry list of new medications, check back for Part 2!
First a little bit about the appointment. It was at a hospital and was a really big new building. I met with the neurologist and another doctor/neuro (an intern I guess), both women, for an hour and a half. There were three parts. The first part was an interview that covered everything about my medical history, emotional state and of course all aspects of my headaches. The second part was a physical exam. The only thing odd they noticed was something about my throat - they said they couldn't see it. The third part was developing a game plan to fight the headaches. Then at the very end, I went to a separate part of the hospital to get my iron level tested (and one other thing I can't remember). Because they drew blood in the same vein as last week, the vein collapsed and it left a nasty mark and I haven't been able to lift anything with my right arm.
My neurologist diagnosed me with "chronic migraine" - she said that what I'm having is migraines, but some are worse than others. She thinks I have a sleep problem, and that's why I'm getting the headaches. I don't have trouble falling asleep, and I don't usually wake up much in the middle of the night, so I had always assumed my sleep was fine. However, I'm always tired, and no matter how much sleep I get, I never wake up feeling refreshed. My dad has sleep apnea, which can be hereditary, and I apparently have a throat issue... Sleep apnea is common in overweight men, but me?? The neuro told me that it's not a well-known fact, but it's also possible for tall, thin women (like me) to have sleep apnea.
Side note, I learned that apparently it's common for kids who sleepwalk to later develop migraines - and I sleepwalked a lot as a kid.
My neurologist also thinks that, based on my answers to the emotional questions, I have low serotonin and one other thing that, of course, I can't remember. Sorry. It was information overload!
So, for the game plan, including my laundry list of new medications, check back for Part 2!
Sunday, February 15, 2009
Natural Progesterone, Compounding Pharmacies
So my neurologist decided he didn't want to wait until I started a regular female cycle to get my hormones tested. I had the blood tests done last week (they took like 7 tubes of blood). My neuro also didn't want to wait to get the results before starting me on natural progesterone. He thinks my body has low levels of progesterone and that might be causing my headaches. Since you can only get progestin, the synthetic form of progesterone, at the regular pharmacy, I had to go to a compounding pharmacy where they mix the stuff for you.
I don't know if I'm sheltered or what, but I had never heard of a compounding pharmacy. So for those of you who haven't either, I picked up a brochure at the place and wanted to share some info with you. The compounding pharmacy has a nurse consultant on staff, according to the brochure. Not sure if the "pharmacists" are actual certified pharmacists or just studied chemistry or whatever in college.
Side note - according to Wikipedia, "Compounding pharmacy has been caught up in the recent controversy over hormone replacement therapy. Synthetic hormones, manufactured by large drug companies such as Wyeth Pharmaceuticals, were found to lead to increased rates of heart disease, breast cancer and stroke in the Women’s Health Initiative study, halted in 2002. As an alternative to synthetics, many physicians prescribe bioidentical hormones for patients suffering from menopausal symptoms. These hormones are mixed in a compounding pharmacy. There is no evidence that bioidentical hormones are safer than synthetic hormones for this purpose, and groups such as the North American Menopause Society have raised concerns about the marketing of these drugs."
The compounding pharmacy I went to looked really cool - seems like it'd be an awesome place to work. It was like a lab-type place with shelves like CVS would have, but instead of all drugs it had things like Sweet'N Low (certainly not healthy in my opinion) and a huge carton of EVOO (olive oil). It made me think of being a kid and mixing things for fun, like science fair or art projects. If my chemistry teacher in high school hadn't had a stroke and I was actually able to learn chemistry instead of getting an automatic A for playing spades the whole semester, I might have worked in a compounding pharmacy as a career!
Anyway, the brochure calls natural hormones "bioidentical hormones" because it refers to the structure of the hormone, not its source. You can read more about them in my book review post, a few posts down. The progesterone was $31, and supposedly if I fill out a claim form I'll get reimbursed by my medical insurance. I've taken it two nights, and so far, no side effects; but possible side effects I may have to look forward to are: breast tenderness (ok actually I do have that one), headache (this shows up on every list of side effects, doesn't it?), weight gain/loss, acne (already have this from the IUD, even though I'm now off it), loss of scalp hair, increased body/facial hair, drowsiness, dizziness, etc.
My hormone test results should come in this week, so I'll know if I need to keep taking progesterone or not.
At church this morning the preacher talked about how sometimes we make life more difficult than it should be, and we need to trust God. The sermon had an emphasis on healing and was pretty powerful for me. I'm trying to accept the fact that I don't need to "do" anything to be healed (and by "do" I mean "earn"); if it's in God's plan, fine; if not, I need to trust that he'll bring me through each and every headache.
I don't know if I'm sheltered or what, but I had never heard of a compounding pharmacy. So for those of you who haven't either, I picked up a brochure at the place and wanted to share some info with you. The compounding pharmacy has a nurse consultant on staff, according to the brochure. Not sure if the "pharmacists" are actual certified pharmacists or just studied chemistry or whatever in college.
Side note - according to Wikipedia, "Compounding pharmacy has been caught up in the recent controversy over hormone replacement therapy. Synthetic hormones, manufactured by large drug companies such as Wyeth Pharmaceuticals, were found to lead to increased rates of heart disease, breast cancer and stroke in the Women’s Health Initiative study, halted in 2002. As an alternative to synthetics, many physicians prescribe bioidentical hormones for patients suffering from menopausal symptoms. These hormones are mixed in a compounding pharmacy. There is no evidence that bioidentical hormones are safer than synthetic hormones for this purpose, and groups such as the North American Menopause Society have raised concerns about the marketing of these drugs."
The compounding pharmacy I went to looked really cool - seems like it'd be an awesome place to work. It was like a lab-type place with shelves like CVS would have, but instead of all drugs it had things like Sweet'N Low (certainly not healthy in my opinion) and a huge carton of EVOO (olive oil). It made me think of being a kid and mixing things for fun, like science fair or art projects. If my chemistry teacher in high school hadn't had a stroke and I was actually able to learn chemistry instead of getting an automatic A for playing spades the whole semester, I might have worked in a compounding pharmacy as a career!
Anyway, the brochure calls natural hormones "bioidentical hormones" because it refers to the structure of the hormone, not its source. You can read more about them in my book review post, a few posts down. The progesterone was $31, and supposedly if I fill out a claim form I'll get reimbursed by my medical insurance. I've taken it two nights, and so far, no side effects; but possible side effects I may have to look forward to are: breast tenderness (ok actually I do have that one), headache (this shows up on every list of side effects, doesn't it?), weight gain/loss, acne (already have this from the IUD, even though I'm now off it), loss of scalp hair, increased body/facial hair, drowsiness, dizziness, etc.
My hormone test results should come in this week, so I'll know if I need to keep taking progesterone or not.
At church this morning the preacher talked about how sometimes we make life more difficult than it should be, and we need to trust God. The sermon had an emphasis on healing and was pretty powerful for me. I'm trying to accept the fact that I don't need to "do" anything to be healed (and by "do" I mean "earn"); if it's in God's plan, fine; if not, I need to trust that he'll bring me through each and every headache.
Wednesday, February 11, 2009
Factor V Leiden
Oh my gosh. I have so much news, I'm going to have to break it up into two posts. Plus it's getting late and I just got a headache (me?!). :)
So I'll start with very cool news. Well, most people wouldn't think it's cool, but I do. My mom has become a Facebook fanatic and she recently found a "long lost" relative on my dad's side via Facebook. This relative told her that a condition called Factor V Leiden runs in my dad's side of the family (it's common in Italians, which they are, and I am too, partly). Basically, the condition is a genetic disorder where the blood has a tendency to clot. People who have it have a risk of stroke, which is why most people wouldn't think the news is cool. But migraines have been linked to vein blood clots and therefore this news gives me a little hope of a cure for my headaches.
Thanks to Mayo Clinic, you can read all about Factor V Leiden. It mentions a test you can get to see if you have it. I had a neurology appointment yesterday and ended up getting the blood test done that day as well, so I should have results in about a week. If I do have the condition, treatments would be Herapin and Warafin, blood thinners, but I'm not sure if I'd be able to take them unless I actually have blood clots. I'm going to wait and see what my test results say first.
Two more updates:
1) I'm finally stopping Bystolic. My neuro checked my heart rate and was shocked that it was so low, and I had a thermometer in my mouth at that time (he said it had something to do with a thyroid test and I ended up getting a blood test for that too) so I couldn't talk much, but I did manage to say "Bystolic" and he said OOOH! Since my last visit, in Dec. I think, he had forgotten I was on it. I asked if I could stop and he said yes. I was taking it for migraine prevention and I've had migraines lately, so there's no point. My heart rate was down to about 60 beats per minute, and today it's about 80 (he didn't specify to wean off it, but I'm going to just to be safe).
2) My appointment with the new neuro has been scheduled. It's NEXT WEEK! I'm nervous because my neuro just put me on progesterone (more about that in my next post), and I'm afraid the new neuro is going to change things up now that I'm finally potentially starting something that might maybe perhaps but probably not work.
Next post: natural progesterone, and my first compounding pharmacy experience!
So I'll start with very cool news. Well, most people wouldn't think it's cool, but I do. My mom has become a Facebook fanatic and she recently found a "long lost" relative on my dad's side via Facebook. This relative told her that a condition called Factor V Leiden runs in my dad's side of the family (it's common in Italians, which they are, and I am too, partly). Basically, the condition is a genetic disorder where the blood has a tendency to clot. People who have it have a risk of stroke, which is why most people wouldn't think the news is cool. But migraines have been linked to vein blood clots and therefore this news gives me a little hope of a cure for my headaches.
Thanks to Mayo Clinic, you can read all about Factor V Leiden. It mentions a test you can get to see if you have it. I had a neurology appointment yesterday and ended up getting the blood test done that day as well, so I should have results in about a week. If I do have the condition, treatments would be Herapin and Warafin, blood thinners, but I'm not sure if I'd be able to take them unless I actually have blood clots. I'm going to wait and see what my test results say first.
Two more updates:
1) I'm finally stopping Bystolic. My neuro checked my heart rate and was shocked that it was so low, and I had a thermometer in my mouth at that time (he said it had something to do with a thyroid test and I ended up getting a blood test for that too) so I couldn't talk much, but I did manage to say "Bystolic" and he said OOOH! Since my last visit, in Dec. I think, he had forgotten I was on it. I asked if I could stop and he said yes. I was taking it for migraine prevention and I've had migraines lately, so there's no point. My heart rate was down to about 60 beats per minute, and today it's about 80 (he didn't specify to wean off it, but I'm going to just to be safe).
2) My appointment with the new neuro has been scheduled. It's NEXT WEEK! I'm nervous because my neuro just put me on progesterone (more about that in my next post), and I'm afraid the new neuro is going to change things up now that I'm finally potentially starting something that might maybe perhaps but probably not work.
Next post: natural progesterone, and my first compounding pharmacy experience!
Wednesday, February 4, 2009
Book Review: Natural Hormone Balance
I finally finished Natural Hormone Balance for Women by Uzzi Reiss, M.D./O.B. Gyn. It wasn't the easiest read - somewhat technical and granular. In this book, Reiss tries to convince women to take natural hormones instead of created ones - for example, take natural progesterone instead of progestin, which is in certain birth controls pills, and the IUD I just had removed. Natural hormones are exact replicas and many are made from soybeans and wild yams. Chapter 1 says, "These plants contain unique compounds that are processed chemically and made into the identical hormones you yourself produce. However, when you eat soy or yams, your body cannot utilize the compounds as hormones." You can access these hormones through prescription or over-the-counter (Appendix A gives places to buy natural hormones).
The book examines various types of natural hormones and their positive effects on the body such as feeling of youthfulness, clear mind, improved skin complexion, less anxiety, etc. Reiss says that since natural hormones can't be patented, pharma companies aren't researching them, so there aren't really many stats on their effectiveness. His "everyone's doing it wrong" approach (my words, not his) made me skeptic. But at the same time, it makes sense. Chemicalized, synthetic hormones aren't natural and your body might reject them.
Cancer is also addressed in the book, because most people including myself question the correlation of cancer and hormones. From what I gathered from the book, if you do the right combination of natural hormones, you won't increase your chances of getting cancer. It's complicated, and this post would be too long if I explained it further.
So what does this have to do with headaches? The book actually only mentions migraines and headaches a handful of times; it's more about looking and feeling younger and how to take the hormones. But if your hormones aren't balanced, bad things can happen to your body, like headaches. So it's worth getting your hormone levels checked via blood tests, which I'm going to do as soon as I can. Then, based on the results, I'll look into taking the natural hormones needed.