TV & a sign

Vague title, but this blog post is so random I wasn't sure what else to put. It all started when I received a call at work from a CBS reporter. I still work at a public relations agency part-time, so that's a pretty normal occurrence. Well turns out it was a producer for WCBS, a local news channel in New York who was doing a story on nightmares as side effects of some medications, and she stumbled upon my blog post, appropriately named "Nightmare side effects." She was having trouble finding people to interview and she read about how Bystolic gave me nightmares. Because I'm in North Carolina, an affiliate news channel (WRAL) sent a cameraman to film me while the producer asked me questions via speakerphone.

The interview took place in my condo, and I explained how I've tried a lot of things for headaches and how beta blockers such as Bystolic are commonly prescribed as preventatives, but none of them worked for me. Then I went into the details of the nightmares, how realistic they were and how one that stood out involved me stabbing someone repeatedly. It was self-defense, but it was very detailed. I also said that compared to other side effects I've experienced, nightmares didn't bother me too much. Then the cameraman took B-roll footage of some of my pill bottles, me coming in the door and putting down my bags, me reading a magazine, me playing with Ellie, etc. We did a fun shot where he filmed while walking into the kitchen and then pointed the camera at our knives while I pulled one out and held it in front of the camera.

Shooting B-roll footage in my condo!

Instragram photo from my new toy, my iPhone (99cent for the 3G version!)

I'm not sure if I'll get to see the final video unless WCBS puts it on their website, so if any of you live in the area, let me know if you see it!

So we covered the TV, now what about the "sign" part of this blog post's title? Back when I was working full time my office was right outside a doorway where people smoked, and the building was old so the smoke went through into my office, which didn't help my headaches. I contacted the people in charge of the office building about it, and they said they would look into making a rule that required people to smoke a certain distance from the building.

Well, nothing happened so I taped up my own handmade sign outside the door. Some smokers listened to it and some ignored it; eventually it was taken down. Fast forward a few years (I would say at least 2-3 years) and the building added a designated smoking section away from the building, removing the ash trays from the trash can just outside the door. Then yesterday at work, my boss pointed out this sign, right where my homemade one had been:

Sign of success!

Success! :)

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!

Echocardiogram results; Bystolic Q&A

Drum roll, please....

No hole in my heart! Woohoo. I was ready to have heart surgery too. Of course, I would have ruled out other things first. Anyway, if you have no idea what I'm talking about, see my last post. I encourage everyone who has headaches/migraines to get the test done though, assuming your insurance covers it, because ya never know...

So moving on to other things, this health Web site called Wellsphere publishes my blog (among other blogs) and they have a Q&A section, so I decided to ask a question. Here's the link, and here's the Q&A:

Q:

Is anyone else on Bystolic (nebivolol) for headaches/migraines?

I've been on it (5 mg/day) for at least six months, and while my migraines have gone away for the most part, I still have about 10-15 headaches a month. My neurologist thinks it's helping my migraines, but I'm not sure if it's that or something else. I didn't have many migraines that often to begin with.

If you're on it or have tried it, please weigh in. Is it helping? Did you have any side effects? (I haven't noticed any except for a slower heart rate). I'm nervous about being on such a new medication when I don't even think it's helping.

Thanks!

-Heather

A:

Heather,

Bystolic is a beta blocker, and beta blockers are quite effective Migraine preventive medications for many people. However, after five months, it's working as well as it's going to unless you increase your dosage. If you're worried about Bystolic because it's new, there are many older beta blockers you could try, including propranolol/Inderal (Note from Heather - I've tried these; bad side effects)

You are definitely still having too many Migraines. Research is increasingly showing that Migraine is a progressive neruological disease that can cause brain damage in some patients. Those who have three or more Migraines a month are at more risk for such damage than people who have fewer than three Migraines a month.

For more information, see Is Migraine a Progressive Brain Disease? and Yes, Migraines Can Cause Brain Damage.

Don't just settle. It's far too important. If your doctor won't work with you to find better treatment, it's time for a new doctor.

Good luck,

Teri

(Back to Heather:)

Now, Teri isn't a doctor, but she seems to have a lot of knowledge when it comes to headaches and migraines. Check out her blog here.

Speaking of migraines, I had my first one in a while (I mostly get headaches) on Friday. I'm nervous that since I've had my IUD for two years, my body is getting used to it and I'm going to have migraines like I did when my body got used to The Pill. I hope I'm wrong, but we'll see.

To wrap up this post, I'd like to thank God for the good test results today!

Is Bystolic helping my migraines?

Someone commented the other day on an old post I made when I first started taking Bystolic, asking if it is making a difference in my migraines. I decided to include my answer in this post so it has more visibility.

Short answer: it's complicated.

My neurologist is convinced that the Bystolic is preventing migraines. While I haven't had full-blown migraine in a while, I still have nausea and light sensitivity with some headaches. And of course, I get about 15 headaches a month, so those could be considered mini-migraines.

Other factors could tie in - I had migraines when I was on birth control pills, now I have an IUD (Mirena). I haven't been spotting as bad from it (I've had it about 2 years and had bad spotting the first year and a half). When I was on the pill though, I was in college and had an awful sleep schedule, so that could have caused my migraines - or maybe it was a combination of that and The Pill.

I just looked at my headache calendar and my last migraine was in July; before that, March, when I started the Bystolic. And before that, I had them about once or twice a month.

So maybe Bystolic is helping. I haven't had any noticeable side effects, so I don't mind taking it just to be safe!
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _

Quick update on the Naproxen - it's starting to upset my stomach, but I was able to get some Nexium samples, which I take once a day. I still have an upset stomach but it's not too bad.

Also, my final physical therapy appointment was last week. The therapist suggested that I take a heating pad to work for my neck/shoulders, so I did that during the week and it seemed to help. The headaches that I've had last week would come and go and never really stuck, which is awesome. She also said to do yoga. I have a yoga video, but I haven't done it recently; I did work out on the treadmill last week but that's about it. I need to make time for workouts, because exercise seems to improve my mood in additon to helping the headaches.

Naproxen - my new weapon?

In my war with headaches, I have yet another plan. Physical therapy didn't work, so I'm stopping that. I'm still on Bystolic to prevent migraines (I wish it would prevent headaches too, but I still get about 15 headaches per month). When I visited my neurologist last week, I mentioned that I take Aleve when I get headaches and that it generally works. My neurologist wrote me a prescription for Naproxen (which is also Aleve) - 250 mg twice a day for a month and a half, until I see him next.

I expressed my concern for rebound headaches and also mentioned that sometimes when I take Aleve a lot, my body seems to get used to it and it doesn't help as much. He said that he didn't think I'd have a problem and said to just try it. He did say that it could upset my stomach so he told me to take an antacid tablet with it at night (he prescribed Nexium, but my stupid insurance didn't cover it, so it would've been like 150 bucks).

The plan is to knock out my headache cycle, because right now my body is accustomed to having frequent headaches. So Naproxen, please please please win the war for me!


Naproxen Info

Neuro Non-update and Bystolic

I'm such a loser - I wrote my neurology appointment for the wrong day in my calendar, so I missed my appointment which should have been Monday. I felt so bad, and dumb...I admit that I tend to do dumb things, but I'm so used to having tons of doctor appointments that it keeping a schedule comes naturally for me. Ha. Anyways, so now they're booked 3 weeks straight, so they had to schedule a double booking, whatever that means, for next week.

Now I have to refill my Bystolic since I only have one pill left. But I think my neuro would have kept me on it either way, since I'm still not getting bad migraines, and he says it's because of the Bystolic. Speaking of which, is anyone who is reading this on the stuff? It's so new that I worry about it. I guess if it did have long-term adverse affects though, nobody would know right away. Yikes.

Oh, and I scheduled two more physical therapy sessions and I'm going to see what my neuro says about whether I should keep going or not.

I had lots of headaches in a big spurt over the weekend (and before and after...except Monday when my body gave me a nice break) but now I feel pretty good. I think it was somewhat hormonal. Even though I'm not getting periods anymore because of my IUD, I had pretty bad cramps around the same time I was getting the headaches.

Fun stuff.

Nightguard, Zoloft, Physical Therapy

Oh my, where do I start?

The other night my husband heard me grinding my teeth, which I guess is one of the many destructive ways my body deals with stress. I woke up with a headache the next day. That morning at physical therapy, I told my physical therapist and she suggested buying a nightguard. My dentist hasn't said anything about my teeth related to grinding and my neurologist has given me muscle relaxers to take a night to prevent it which didn't help my headaches, but I've never tried a nightguard, so I bought this one:

http://www.dentek.com/shop.php?target=products&product_id=16

It's pretty neat, and luckily I rarely have problems getting to sleep at night, so it only takes me about 3 minutes to fall asleep instead of one (no, I did not actually time this - is that even possible?). For people who have insomnia, it might take some getting used to. I have a dentist appointment coming up, so I'm going to check and make sure it's ok if I use it for a few months to see if my headaches are reduced.

Next item, Zoloft. What a disaster. My body completely rejected it. After calling my neuro and telling the nurse about my stomach issues with Zoloft, she suggested I reduce the dosage from 50 mg back down to 25 mg. After a week, it didn't help and I couldn't take getting sick anymore, so I called again. This time, my neurologist got on the phone, and he said something along the line of..."Heather, you're something else." Then he started naming other medications to see if I tried them with previous neurologists, which I had, and none worked, obviously. He said he'd think about what to do next and we'd talk about it at my next appointment mid-August. I feel like he dreads seeing me because nothing helps and I always have crappy side effects. So, right now, I'm still on 10 mg of Bystolic, which he thinks is preventing migraines (not headaches).

I'm still getting bad headaches though, and some migraine symptoms - nausea and light sensitivity. Physical therapy isn't working, and I only have one more appointment scheduled, so I'm afraid it's going to be just like the chiropractor - they'll tell me they can't help me, and that will be sad...

Physical Therapy

I started seeing a physical therapist for headaches and so far I've had two sessions. The place is connected to a neurology practice, so they have a lot of headache patients - in fact, one came in while I was there today. What's funny, or really sad, is that I called one PT place before finding this one and the receptionist, after asking the reason I needed to see a physical therapist, said I should see a neurologist for headaches. Ya think?

They've been doing some neat things so far for me:

-Trigger point massage
-Heat treatment
-A machine, sorry I can't remember the name, but it has two wires that clip on my earlobes and a current runs through the wires. It does something to the alpha waves in my brain. I couldn't feel anything but I think they're going to turn it higher next time.
-Another machine that I don't know the name of, sorry, but the therapist stuck four squares with wires on my upper back and it shot a current so strong it made my muscles jerk. It didn't hurt though; it felt like little jolts through my back
-Neck traction (a machine pulled at my neck at 15 second intervals while I was lying down) - this gave me a headache because it pulled right behind my earlobes where my headaches often start; however, the headache went away soon afterward.
-Stretches - I learned neck and shoulder stretches that I can do at home.

They also suggested I use a heating pad on my neck every day after work because I sit at a desk in front of a laptop all day, and my headaches usually start in the afternoon and get worse and worse from there. It feels great to go home and relax my neck for a few minutes.

So, I don't want to get my hopes up, BUT, I'm doing SOMETHING besides trying medication after medication, and that makes me feel good.

Speaking of which, I still have stomach issues - I don't know if it's from stopping Lyrica or starting Zoloft, but it's getting old. I'm going to keep taking it (and I'm also still on Bystolic), because I pretty much need it to get through my job right now. (I'm on it for headache prevention, if the headaches are from stress and the Zoloft helps the stress, it makes sense to keep taking it.)

In an ideal world, physical therapy would work and I'd get to drop the drugs.

Have a wonderful and headache-free weekend!

Lastest Neuro Visit

Why am I typing this Wednesday morning when I should be at work? Let me explain.

I saw my neurologist Monday, and we had a good talk. Note to anyone searching for a neuro or not happy with theirs - keep looking until you find one who cares about YOU and not just your condition, because your body/mind are connected and likely affect your condition. Also, mine doesn't scoff at alternative medicine. Don't get me wrong - he puts me on plenty of drugs, but that's part of his job. Here are the highlights:

- Physical Therapy - I asked him if I should try this since I get lots of tension headaches that seem to come from the neck, and he said that was a good idea and wrote me a referral. It looks like my insurance will cover 20 visits a year, so I'm going to make an appointment. I've had physical therapy twice for my hip, and it helped, so I'm going into this with a positive mindset.

- Acupuncture - My neuro said I should give it a try. He said it helps a lot of people with headaches and is very relaxing. I may try PT first though, since it's cheaper.

- Biofeedback - My dad has tried this for his fibromyalgia. He said you listen to tapes and go through visualization and positive thinking exercises. More on that here. I think my neuro said he can do this, so I'm going to ask him about it next time (I had thought he wrote a note for the office worker to take care of it but it was actually the PT referral).

- Life Coach - Not a typical treatment for headaches, but I told him how stressed I was with work, and he said I should see someone on career counseling. He also said I could set up an appointment with my preacher, so I think I'm going to do that. Once I "figure things out" I'm certain my stress levels will drop. And he did suggest prayer, which I've been doing, but prayer is a conversation with God (two-sided) and I have trouble with the listening part. What's interesting is at Bible study last night we talked about Christian meditation and how you should take time each day in silence and let God speak to you. I'm going to start doing this.

- Meds - Lyrica wasn't working, so I'm going off it. I'm still on Bystolic (5 mg each night), since my neuro is convinced that it's almost eliminated my migraines (not headaches). Could be true, and since I don't have noticeable side effects, I'm fine with staying on it. And now my latest medication to help my tension headaches is, drumroll please...Zoloft.

Which brings me back to why I'm home sick today. Warning: TMI up ahead in three, two...Zoloft gives me awful diarrhea. I take 25 mg each night and after a week I'll increase to 50 mg at night, then 75 mg if I want to (yeah right). I started it Mon. night and was sick Tues. morning. I went to work but only ate oatmeal and pretzels. Of course, because I didn't eat much, I got an awful headache. I took it again last night, and this morning I still had the headache and upset stomach, so I called in sick. I'm going to work from home this afternoon though because I took Butalbital (Fioricet) and feel better (except for the stomach).

Zoloft scares me because I know how hard it was to get off the Lexapro, but I need to keep trying things if I'm going to get better, and plus I could use the serotonin boost. I've had so much anxiety lately.

I have some appointments to schedule (and a war to win)!

Neurology Appointment Update

At my neurology appointment earlier this week I asked my neurologist about the seizure medication I mentioned in my last post, but although he seemed to be willing to have me try it last time, this time he said it wouldn't work for me because I'm getting tension-like headaches and not migraines (I could argue that the Fioricet stopped the migraines, but I don't argue with doctors...or anyone for that matter, except my husband). He thinks that since I haven't had a migraine in about a month, the Bystolic must be working. Speaking of Bystolic, a few posts down is a very encouraging comment from someone who is taking the drug, and - get this - it's WORKING! It's good to hear that actually happens - seriously!

Also at the appointment I asked my neuro about the glucose test and he said it wouldn't show anything and that everyone gets headaches when they eat too much sugar. I also showed him a printout about Sinol and he said he hadn't heard of it but he had heard of capsaicin, an ingredient which I believe is derived from hot peppers and is clinically proven to help headaches. He seemed very interested in hearing if it works for me. CVS no longer carries it, and I couldn't find it at Rite Aid or Whole Foods either, so I e-mailed the source to find out where I can find it. I'll probably have to order it online. They revamped their Web site; check it out if you're interested: click here.

My neuro put me BACK on 75 mg of Lyrica because he thinks it worked for me at one point, which I don't remember, but I don't remember any bad side effects either, so I'm willing to try it. However, I quickly discovered a side effect the last two days - drowsiness. I take it at night but it still makes me drowsy in the morning; in fact, I turned off my alarm in my sleep and was really late for work yesterday and today. I'll have to set a second alarm Monday. Thank goodness I have a nice boss!

Meds I'm currently taking: 10 mg Lexapro, 10 mg Bystolic, 75 mg Lyrica, plus my Mirena IUD and a daily multivitamin, and Butalbital (Fioricet), Aleve or Exedrin Migraine when I get headaches.

Nightmare side effects

Now that the Bystolic I'm taking has had a few weeks to sink into my body, I've noticed an interesting side effect - nightmares. I've tried other meds that caused realistic or wild dreams, but these nighmares are pretty intense. And by intense, I mean VIOLENT. I won't go into detail but I'm glad I'm getting off the stuff.

At least this side effect wasn't really in "real" life. It could have been much worse, and that's not why I'm getting off it. Unfortunately, it hasn't helped my headaches a bit. They've been awful and very persistent lately.

Tomorrow I have a neurology appointment, and I'm almost certain my neuro will take me off Bystolic. I'm going to ask to try Zonisamide, or Zonegran, which is a medication for seizures that my nurse sister recommended, and when I brought it up to my neuro last time, he said he was considering that one.

I really wish insurance would cover more than just drugs so I could try acupuncture or something different. I'll ask my neuro about Sinol tomorrow also. I have a list of the ingredients printed out. CVS no longer carries the nasal spray but the Sinol people said that Rite Aid does. I hope I can at least give it a try.

I'll post an update on my appointment sometime this week.

Although my headaches are a part of me and it seems like they will never go away, I'm STILL fighting this war, and I WILL get rid of them some day (even if I have to wait until heaven- they WILL be gone)!

Med/Head updates

I've been on Bystolic for more than a week and haven't noticed a single side effect! I'm still on a small dose of Lexapro and have mild dry mouth from that, but that's it. However, I haven't noticed an improvement in my headaches. I had a bad sugar headache yesterday from my sister's bridal shower (I can't say no to cake...and chocolate, and punch, and cream puffs, and jelly beans and well you get the idea). Mom said I should get my glucose levels checked so I'll ask my neuro about that. I'm also going to find out more about Sinol, a new nasal spray that helps headaches/migraines mentioned in the comment (thanks Rebeca!) on my last post. If anyone's tried this, please share your experience!

Happy Easter everybody! I'm proud to be a Christian and worship Jesus who died for our sins so we can choose to follow him and live forever in heaven. God gets me through life, and I could not deal with many things - including my headaches - without him. If anyone wants to know more, just ask!

New medication - Bystolic (Nebivolol)

Yesterday at my monthly neurology appointment, I asked my neurologist about seeing a nutritionist, and he said he didn't think I would find anything, but I could try it. I decided to save money and instead start writing down what I eat on my headache calendar for days I have headaches. I also asked about Zonisamide, which works for one of my sister's friends. He said he was considering that one, but first he wanted me to try a new medication, similar to Toprol but it shouldn't lower my heart rate down to the 40s (per min.) like Toprol did.

The new drug is called Bystolic, or Nebivolol. WebMD's description is here and Drugs.com's is here.

What's scary is it was approved last December...it's only March. It is so new that my pharmacist couldn't read my doctor's writing because they weren't familiar with the drug, and when I finally did pick it up at CVS, the description was non-existent. On the tear-off sheet that lists side effects, instructions etc. it says "This is a BEIGE, TRIANGULAR-shaped, TABLET imprinted with FL on the front and 5MG on the back."

I kid you not.

In addition to the research I did from the above links, I called my mom to see if she's heard of it (she's a nurse). I left her a voicemail, as I did for my sister, who is also a nurse. They must both be working right now. If they tell me anything earth-shattering about this drug, I'll be sure to post it! Guess I'll go ahead and start taking it tonight...I have a cold and a 100 degree fever, so maybe it'll knock me out. :o)