Stopping Progesterone

My headaches have been relentless lately, showing no sign of improvement. I'm not sure what's going on, but I'm guessing it is related to stress because the fall semester has started. I enjoy my design classes, but the homework takes forever. I feel like that's all I do.

Last week I saw my gyno and told her I wanted to stop the progesterone cream. My reasons: acne, increased migraines and debilitating cramps. I can't remember if I blogged about it, but one night my menstrual cramps kept me up until 5:30 or so in the morning. Also, I missed church and class because of cramps. I've always had bad cramps, but never that bad! My gyno suggested I try yet another form of progesterone, sublingual drops, but I told her I needed a break from progesterone. Maybe I'll try the drops later, but right now I feel like I've messed with my hormones enough and my body is pissed at me.

Even though my headaches and migraines have been bad and I've used way too much medication lately, I have still been working out. Last Thursday I did yoga and running with a pounding head, and my head pain actually decreased while I was running. I'm trying to keep it up, but I'm also trying to not take as much medication and unfortunately the pain is starting to take over my life right now.

At least we survived Hurricane Irene. I hope you all did as well!

Pre-Irene sunset

Post-Irene sunset

Gyno Appointment Update; plus Bachmann News

I saw my gyno and neuro this week, but I'll start with the gyno. If you remember from a few blog posts back, I've been having bad cramping and was hoping to get an ultrasound or some kind of testing done. My gyno felt that my symptoms weren't alarming and she didn't see the need for me to have an ultrasound. I asked about endometriosis, and she doesn't think I have it.

Maybe that's good news, but then what would be causing my pain? We decided that I'm probably on too high of a dose of the progesterone cream, so this cycle I don't have to take the progesterone and next cycle I'll cut my dose in half (using it once a day instead of twice). I hope this will clear up my acne, decrease my stomach bloating, and stop the cramping, all side effects of the progesterone. Plus I'm convinced that's why my migraines have increased, although the whole reason I'm on it is so they'll decrease. Have I mentioned how much I hate hormones, both synthetic and bioidentical?

My gyno also reviewed my charts (I take my temperature 7 a.m. each morning and chart it to track where I am in my cycle) and noticed that my temperatures are abnormally low, so she asked if I've had my thyroid checked. I have, but it's been about five years and she said things can change within that time, so I had the blood test done. Once I get the results I'll share them in a blog post.

Even if you don't keep up with politics, I'm sure you heard about this idiotic article about Representative Michele Bachmann's migraines. I could go on and on about why this and other similar articles are ridiculous, but I can't say it better than Diana Lee in her Migraine.com article. Well, maybe I'd change the intro, but I prefer to avoid politics so I'll leave it at that. ;) Check out Diana's article, and please take her advice on defending migraineurs as people bring up this issue.

Neuro update coming soon. Until then, be well, dear friends! :)

Dog Sitting

Colt

I've been begging my husband for a dog, but we live in a condo and that's his excuse to say no. Plenty of our neighbors have dogs and we have a Greenway nearby, but...still no. Lucky for me, he LOOOOVES my sister and bro-in-law's dog, Colt. So much, in fact, that agrees to dogsit. At first we had to stay at their house because he didn't want a dog here, but the last two times Colt *was allowed* to stay here. Starting today, we're watching him for about 1 1/2 weeks!

This isn't news, but pets can be good for your health. We already went on a 45 minute walk today, 10 minutes of that running without stopping (huge for me). He's a sweet dog who stays calm unless you want to play, and then he gets all wild and energetic. I don't think I've ever met a dog who listens as well as he does, and I'm not just saying that because he's my "nephew." Maybe one day (when we go back to a house) I'll have a dog of my own.

Not related to Colt, but I haven't done a health update in a while, partly because my health has been weird. Of course I'm still having the headaches and a lot more migraines than I'd like. Luckily Aleve (for headaches) and Butalbital (for migraines) still help, as long as I limit my use. Which means the majority of the time I suffer through the head pain (it's not as hard to do since I'm not working full time anymore, but it still sucks). The thought of the meds not working in the future absolutely terrifies me, to the point of tears sometimes. I hate relying on drugs like that, but at the same time I'm thankful for them.

But here's the weird part (dudes will probably want to stop reading at this point). Twice over the last few months I had bad cramping incidences that weren't during my period. The first one woke me up at night and I went to the computer to research it but I couldn't figure out what it was. I finally was able to go to sleep once I got my heating pad. The second incident was a few weeks ago. It felt like I had menstrual cramps and they kept getting worse and worse over a few days until finally it was almost like I was in labor; it would come and go in waves and I'd almost have trouble breathing the pain was so intense. I made an appointment with my gyno because I was due for an annual visit, but the pain went away that day, until she did the exam and felt my ovaries, that is. Ouch. She said the left one, which hurt the worst, felt weird (I can't remember the exact word she used). She wouldn't do a consultation with me about the issue in addition to the exam, I guess because my insurance would want them to be two different appointments - lame, I know - so I didn't find out anything else.

When the pain went away, I assumed I had an ovarian cyst that ruptured. But then when I started my period yesterday the cramps were way worse than normal, and "normal" is bad for me. Last night I read about endometriosis, one of the conditions that came up in my earlier research, but reading the description and diagnosis options made me so nauseous my face turned green (seriously), so I had to stop.

Maybe all this is related to the progesterone I'm taking, who knows. I'll probably schedule an appointment with my gyno. In the meantime, if you think you might know what's wrong with me, I'm all ears. :)

GelStat Migraine

My busy semester is OVER! I'm so thankful that while taking 16 credit hours, working 10 hours a week and having chronic headaches and occasional migraines, I managed to earn a 3.8 GPA and I only missed ONE class due to a migraine! I really feel that this is God's plan for me and He's giving me the strength to do it.

Thank you, readers and friends, for being patient with my lack of blog posts. This summer I'll be working more but I only have one class, so I hope to be more active here. And my husband finally fixed my browser issues so I can now leave comments on your blogs again. :)

During the semester, my headaches have remained the same, but I haven't given up the fight. Here's what I'm trying:

• Butterbur: I tried this about 3 months and gave up because I noticed no improvements, and it was upsetting my stomach.
• TMJ mouth guard: I'm still seeing a TMJ specialist every few months, and we gradually decreased the time I'm required to wear my mouth guard. Now I only need to have it in at night (8-10 hrs). I don't think it's impacted my headaches but I do have a lot less jaw pain.
• Therapy: I'm still seeing a therapist about once every three weeks for stress, anxiety and pain management.
• GelStat Migraine: A friend of mine suggested it and I noticed they have a free trial (I just had to pay $3.99 shipping), so I figured I'd give it a whirl. The first dose I tried helped, but the second didn't, probably because I didn't catch the headache soon enough. Have any of you had success with GelStat?

Empty dose with my hand for size comparison. It actually tasted decent.







• Ice pack: My trusty ice pack has seen better days, so I got a new one. This one is from The Container Store. When I saw it online I assumed it would fit on my entire head, but when I went to buy it I realized it was more like the size of my hand. Does anyone know where you can get a head-size ice bag? 

Cute Retro Ice Bag

• Progesterone: My gyno upped my dose of progesterone (bioidentical hormone) and switched from the pill to cream, which I requested because I thought it might work better. It looks intimidating, but I don't inject it anywhere; instead, I put the specified dose on a tissue and rub it on my inner thighs (one of the many safe spots). The higher dose makes me really tired, but I only use it day 15 to the end of each cycle. It's still early to tell if it's helping.

Progesterone cream

• Drugs: The only drugs I take are Aleve for really bad headaches and Butalbital (Fioricet) for migraines. I'm trying to take as few meds as possible and prevent headaches through a healthy diet and exercise. I've always had this ambition, but now that I've gone through most of the standard migraine meds, I feel a renewed desire to get more serious about exercising. I hope it lasts!

Life Change

Photo from weheartit

As you all know, migraines change your life, both for good and bad. Mostly bad, but over the last few years I have learned to, for example, say "no", thanks to my migraines. Recently, I made a big life change which falls under the good category. 

I've worked in public relations the last four years. I have a bachelor's degree in PR and worked at a fun and energetic agency. During the last four years, however, my headaches and migraines have taken over my life to the point where I realized that my body (physical and emotional) was deteriorating, and I think a lot of it had to do with the high level of stress that goes with a PR job. I've been doing therapy for a year to help me manage this stress, but my body was not dealing with it. So, in December, I quit my job.

A change of scenery seems to be what I needed. I'm still active - in fact, I'm now a full-time graphic design student at the local community college (and I'm doing some occasional contract work for the agency). I should be able to get an associate's degree in about a year and a half. I've always been artsy, and I'm loving my classes! Two out of the five I'm taking are online, so I'm able to be at home a lot more where it's peaceful and relaxing.

Now don't get me wrong: I still have headaches and migraines. But the nearly every day of head pain has lately been every other day or so, and my anxiety and IBS have gotten better. This is a big improvement (so big, in fact, that I've been scared to blog about it because I don't want to jinx myself)! 

Also, I don't want to say definitively that quitting my job and becoming a student is the main reason for this relief because I don't know that for sure. I'm doing lots of other things that could be helping, including:

• I still have my TMJ mouth guard, and I'm slowly cutting back the hours I have to wear it. Maybe the mouth guard and/or cutting back on the hours (down to wearing it 14 hours per day now) is helping.
• I'm on my third cycle of taking Progesterone (bioidentical hormone) pills day 22 through the end of each cycle. I'm almost certain this is a big factor in my improvement.
• My diet has been really good lately. Because I'm home more, I've been eating out less and cooking mostly from scratch, and mostly organic foods (especially meat and dairy because of the whole hormone thing).
• I've been exercising more. 
• My preacher is aware of my struggle and even used me (without naming me) as an example in a sermon after I told her I'd been questioning God about the pain and at the same time wanting to turn it into a positive to help others going through it. I firmly believe that her prayers and those of church members are helping. 

Whatever is helping, I'll take it! I'm still going to seek additional treatment; in fact, now that I have different insurance (through my wonderful husband who is supportive yet a little freaked out about me not working full time haha), I may have a better chance of getting approved for things such as Botox.

I'm so happy to be writing a positive update on here! There really is hope, as I've said all along! :)

Hormone (& Other) Test Results!

I got the results back from my hormone saliva test, and as suspected, my progesterone levels drop during my luteal phase. My gyno prescribed 100 mg of progesterone (bioidentical hormone) which I take at night on day 22 through the end of each cycle. I've only done this for one cycle, and I had two migraines pretty soon after starting it and have had really bad headaches most of the other days. I'm going to stay positive and hope that this is just an adjustment period and that once my body is used to the progesterone boost each cycle, I'll see an improvement in my migraines and headaches.

I also got blood test results back from my neurologist's office. She had all of the following tested:

We hadn't met to review the results, but from what I could tell from looking at them on the web portal, everything was normal except for my carbon dioxide levels, which were a little low. My next neuro appointment is in January, and we'll probably go over the results then.

Hormone Spit Test

I haven't been to any doctors for my headaches in a while (except for my therapist) but over the summer I went to a new gyno for a hormone consultation. I have headaches all the time, but during my period, they're constant, often migraine-level, and drugs don't seem to touch them. The gyno suggested I take a Female Hormone Panel saliva test. I've had my hormones tested by a former neurologist, but it was soon after I stopped hormonal birth control and it was a single blood test (results were normal from what I remember). For this test, I have to fill 11 tubes with spit on particular days throughout my cycle. It's supposed to work better because it's taken before, during and after ovulation, and saliva carries a certain kind of hormones, or something like that. The cost will be $200, but I haven't been taking regular meds or having frequent copays, so that's my justification!

In addition to the test, I've been charting my cycles by taking my temperature every morning, using instructions from Taking Charge of Your Fertility by Toni Weschler. From what I can tell, my luteal phase is too short which means I have low progesterone levels. The former neurologist I mentioned above suspected I had that problem and had me visit a compounding pharmacy to get bioidentical progesterone, but then I saw a new neurologist and she told me stop taking them.

I have 10 more spit tubes to fill, freeze and mail, and then the company will send my gyno the results and we'll review them together. Side note, it's tough filling a tube - maybe 3/4 inch, with spit, not including the foam. The directions say you can chew sugar-free gum a few minutes beforehand, but I've cut fake sugars for good so that's not an option. I tried visualizing myself biting into a juicy strawberry, but that barely made my mouth water. Next time I'm going to look at pictures of food or maybe smell stuff in my fridge and see if that helps!

New Headache Clinic Visit Part 2

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!

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.