Inpatient Program for Migraines

I spent a WEEK in the inpatient program at the Michigan Headache and Neurological Institute. It actually ended up being 2.5 weeks total. You do a full day at the clinic being evaluated and then if they feel you need to be admitted to the hospital you have to wait for insurance approval. I also stayed for a follow up appointment after I left the hospital to tweak the program further.

It was an amazing experience! I felt great at the hospital. I was very lucky that the first protocol that they tried on me worked. It was interveneous DHE/zofran given 3x a day. However, they have many other protocols to try, if that does not work. I also was encouraged to try several different abortive medications while I was there. The idea being that they send you home with some new medications that will not give a rebound like triptans.

I had gotten into a bad cycle after my second pregnancy. My headaches had been out of control or barely controlled while pregnant and nursing. I ended up taking different medications way more than the recommended 2x a week limit. As a result my headaches became nearly constant and I was taking drugs just to get through the day with 2 children. I was and am still doing the Tyramine/MSG free diet but at this point the disease had progressed too much.

The downside of this is I am now on a similar ergot medication at home called Methergine. I take it every 4 hours even through the night. The drug is extremely expensive- my copay is 20%- or $412! The cash price is over $5000. The other down side is after 6 months you have to take a 1 month break from the drug to give your body a break. They did say they have some ideas there.

I am also on another preventative called Baclafen, as well as Nadolol, magnesium, and melatonin at night. They also are working on the hormonal side of things as well.  I have DHE  in injection form for when I get a bad headache. I know a lot of people hate needles, but its much better than going to the ER and paying $79 per injection!

Things are better. I get an average of one really bad headache a week. When that happens I give myself an injection. Most of the time I am able to function really well. It's at least an 80% improvement from before! I have been able to go and do things that I was not able to to do with my children and for that I am thankful!

After a long break....

It has been awhile since I have come to this space! I wish I could say that I am better than I was a year and a half ago headache wise... But I am not. This is a sad thing to write. I had a beautiful baby boy though and that was wonderful! I will tell you more about my migraines this time around and pregnancy later! For now I just wanted to check in and say that I have been looking into getting a occipital nuerostimulater implant at the Cleveland clinic and at the beginning of May I will most likely be admitted to the inpatient program at the Michigan Head Pain and Nuerological institute ( mhni.com for their inpatient program and will probably blog a bit about that too.

Mega Headache Today

Last night I got hit with a mega headache that I still have now. It seems the codeine isnt working that great but at least its taking the edge off a little. I hate when the pain gets so bad you get really depressed and desperate. I also dislike that my husband has to pick up the slack... again.
I have trouble thinking about how long this frequency of headache can go on. 29 more weeks of pregnancy before I can take zomig again.
I guess I am just sad today:(

Fading Summer...

This summer was full of fun things, the county fair, boat rides and state parks!

Migraine wise it has had its up and downs. I had a brief respite right around when I found out that I was pregnant! We are very excited about the upcoming  addition to our family! However managing my migraines has proven more difficult with this pregnancy than with my first. After my brief respite which got me really excited I fell off the tyramine free diet bandwagon big time! I had feta which resulted in a whole day in bed. I also tried mac and cheese in a box (ahem). Lets just say I am back on the migraine/tyramine free wagon shall we?!
So my migraine coping strategies currently are while pregnant (old prepregnancy list- supplements - meds)
propranolol- took in 1st pregnancy too
magnesium
magnesium infusions
butterbar (pentadolex brand)
TENS unit
Headache tea without feverfew
Tylenol with codeine - not great I know but the best you can do


I actually tried to skip a infusion (I was trying to get away with as little as possible during pregnancy) and it was a huge fail. Who knew that low magnesium levels make morning sickness worse? MUCH WORSE! Needless to say I won't be skipping any more!

Etsy started to crackdown on listings with medical claims of any kind. I had to remove my listings. If you would like tea or more tea let me know via comments and I can make a custom listing for you.

Summer Break

We are taking a summer break from blogging! See you in September!
Wishing you a migraine free summer!
-rachel

This Week..

 This week was..

Painting outside!

 The barn behind our house (not ours) caught on fire! You can see the spray of water dousing it. The flames were huge!

                                                         Swimming in the lake!

                                                       Happy 4th of July!

Right Now...

Right now I am...

Loving this cream cheese sandwich with mizuna and a clove of garlic instead of broccoli!

Feeling the cool morning breeze of this wonderful summer morning roll through the open windows

Waiting for my best friend to come over for a quick visit

Had strawberry pie on Saturday to celebrate my birthday early as my husband is on another business trip

Happy that strawberries are not a migraine trigger!

Grateful for my mother in law who is coming tomorrow to watch my son so I can go to my magnesium infusion

Enjoying these early days of summer before its too hot

Picked strawberries with my best friend while catching up on some much needed gossip

Drove to the airport and back at 6 am (its a hour away) and then took a nap with my little one

Ate this polenta pizza outside (I had a picture but it was on my husbands phone)

Frittata and Teff Breakfast Muffins

Made this yummy frittata today. Scroll all the way down the page on the site for the recipe. I used fake cheese and green onions.  I also added red pepper. So easy I cant believe I never made one before!

I also made these Teff  Breakfast Muffins from the Whole Life Nutrition Kitchen blog. They came out wonderful. They have carrot and apples in them too. Teff is a new grain to me and I really like its rich almost molasses-y taste! My husband was like in there molasses in these? Nope! The taste and color are both from the teff grain. It is also high in iron, fiber and hails from Ethiopia.  I made a few substitutions to the recipe including using an egg instead of xanthan gum because I don't love the flavor of it and I didn't have any. I also did not put in raisins and nuts as they are migraine triggers! Oh and I used rice flower instead of tapioca flour. And yes these muffins are gluten free!

RIght Now

Right now I am...

Hardly believing that Finn's first year in Montessori school is over! We went out for ice cream after the ceremony with the grandparents.(homemade custard style= no headache!)

Enjoying this dip on this bread!

Surprised to find that I may be able to tolerate coconut milk, greek yogurt and lemon juice.. so far so good at least no big reaction like goat cheese and regular ice cream

Waiting for my blackout curtains to come- its sooo bright in my bedroom!

Still working on bats (he comes tomorrow!)

Thinking about a list of things I want to do this summer almost like a bucket list!

Excited that garage sale season has begun!

Watching all the things growing and enjoying the seasons first strawberries

Eating these homemade Popsicles with Finn

Signed up with this mama's meal plan service called Whole Food Meal Plans to help with the next month or two of gluten free (helps fertility and it worked last time can't hurt right?!) I tried the free trial one and after making the 3rd recipe from it decided I should subscribe even though its a little pricy but it does make things sooo easy! Most recipes were easy to adapt to no migraine.

Tex Mex Vegetarian Chili Over Polenta

I made this the other night and it turned out delicious! I never would have thought to put chili over polenta but it is wonderful! Its not like football chili either it is a complex mix of flavors which meld together perfectly. This recipe comes from Madhur Jaffery's World Vegetarian cookbook - she is one of my favorite chefs always full of flavor!

Tex Mex Vegetarian Chili Over Polenta adapted from Madhur Jafferey's World Vegetarian

Chili Ingredients
3 Tbs olive oil
1 Leek chopped
3 garlic cloves
1 green or red pepper- I only had a red!
1/4-1 fresh or dried hot pepper like jalapeno
1 1/2 teaspoons ground cumin
2 teaspoons paprika
1/2 ts dried thyme
1/2 ts dried sage
1 ts oregano
1/4 ts cayenne or ancho chili powder - I love ancho!
1 can or cup of Kidney beans - rinsed
1 can or cup of White navy beans or other bean- rinsed
1-2 cans diced tomatoes - drained slightly
3 tablespoons fresh chopped cilantro

Saute leeks and garlic in oil for several minutes then add the peppers. Cook for a few more minutes and add beans and tomatoes. Then add all the seasonings except cilantro. Let cook for 30-50 minutes on low stirring occasionally. Add the cilantro and serve over polenta.

Polenta- Try to find the dry kind and it has less ingredients. It is usually in the Italian aisle. I like organic as it is non GMO. I used the kind of polenta in a log shape that is found in the refrigerated section. It had some dried onion and natural flavors in it. I didn't buy it again even though I was desperate and ate it anyway without problems.
Cook according to package instructions for soft polenta. I added a tablespoon or 2 of butter and a pinch or 2 of salt to the mush and it was wonderful!

And yes the bats are STILL here- ugh

This Week

My husband is away for work again which means I will be here less.
Not much news on the migraine front other than eating hummus (tahini trigger) and american cheese even though it was from the deli had natural flavors aka msg and gave me a headache. I was able to kill it before it morphed into a really bad headache. booooo
The good news is fresh cream and white cooking wine in food has not bothered me at all!

I also made no- peanut butter cookies- recipe coming soon! I made it with brown peabutter and extra sugar and salt as the peabutter is not sweet or salty. They were good!

Finn liked them too!

How are your food experiments going?

Was it the goat cheese?

Sorry I have been away for a few days:(

I have had a bad headache for the past couple days. I had some goat cheese on mother's day figured I would take the risk and have some because I really did not want to cook! That could have been the trigger- hard to say as I did not get a headache until the next afternoon. I had to resort to my old friends Zomig and Cambia.  Today I went to the chiropractor and she said my cranials were off as well as a bunch of other things so hopefully things will get better. Although after major adjustments I often get a headache but then after that its way better.

Fingers crossed!

Wishing you a headache free week!

Deli Meat

Yesterday after shopping for a few things I realized it was lunch time. Usually I eat at home so I can avoid all sorts of migraine triggers on the Migraine Elimination Diet. But what can I say but I was hungry and I knew my husband would be too! I could not for the life of me imagine going home and then making lunch (no leftovers and I was shopping at the nearest target and goodwill 50 minutes away)

So I went through the drive through of this cute little sandwich/bakery/coffee place.

I got a turkey wrap. It had feta but I scraped it off(my husband gladly ate it on his salad).
nothing else seemed offensive other than the DELI meat. I knew it was a risk but decided this could be counted as trying to add something back to see if it is a trigger.

It is a trigger for me...

About 2 hours after I was reaching for some mega pain relievers and tea....

booooooooooo

At least I tried right- however it does not make me want to add things back in!

Decisions- Medication update

So, after much thought I canceled my Botox injections. As soon as I scheduled it I had second thoughts. In the past I have tried 3 rounds of Botox and did not see any difference. I was originally thinking that maybe this time would be different. The more I thought about it though, the less I wanted to do it. I don't like how stiff your head looks, its almost expressionless! Also last time my eye lids drooped ever so slightly (a common side effect) and I don't want it to get worse. To top it all off we are thinking sometime in the near future of having a second child and I just didn't want that in my system at the same time (especially after looking up the animal studies). It also had a $200 copay!

The good news is that I am completely off Zonagram now as well as Nortriptaline. I also stopped the pill. Funny as I always thought the pill did not bother my headaches and perhaps made them better( I used the Nuva Ring and kept it in the full 4 weeks then switched it out keeping hormone leaves pretty constant). Its been a month off it now though and my migraines are not worse, and I am off 2 huge preventatives to boot! So it makes me wonder and hesitant to go back on it! I also have PCOS though and used the pill to manage that so we will have to see what happens in the future I guess. I plan to add some hormone balancing herbs like dong qui to my regimen.

Honey Cake

This was a delicious cake. So simple and completely migraine friendly. It would make a good birthday cake too!  It is a typical Eastern European cake and in Yiddish its is called lekach.

Honey Cake- taken from the Joy of Cooking
Preheat oven to 350 degrees

Cook over low heat until blended
1.5 cups honey
3/4 cup vegetable oil - I used olive
1 cup coffee- i used about a fourth of a cup and the rest water, enough to give some flavor but not a lot of caffeine, use your own judgement you could easily use all water
2 ts vanilla

Remove from heat and cool

Using a mixer beat together for 4-5 minutes
3 eggs
3/4 cup sugar
then add the cooled honey mixture and mix

then add the dry ingredients and mix till well blended with a mixer
3.75 cups of flour
1.5 ts baking soda
1 ts baking powder (aluminum free is best)
2 ts Cinnamon
1/2 ts ground ginger

Scrape the batter into a greased and floured 13 by 9 cake pan (glass is best)

Bake until center poked with toothpick comes out clean.

As soon as the cake is removed from the oven prick the surface with fork creating lots of little holes. Then spoon on and spread evenly across the top
3/4 cup honey
let cake cool and serve. (we liked it with a extra dollop of honey on top!)

Enjoy!
Wishing you a migraine free day!

Right Now

Right Now I Am...

Enjoying the double batch of Rhubarb Crumble based on family recipe just like this

Loving that the "preseason" of my CSA share started this week! So much better than the grocery store, I had forgotten how good fresh, crisp greens can be!

Watched my 2 year old actually eat those greens! With poppy seed dressing but still!

Planted the first row in my garden (basil! cilantro!) before the sun got to me! A little at a time, a little at a time.

Listened to quite a thunderstorm last night!

Got Approved for Botox injections- I have done them before but giving it another shot as it was years ago and my headaches were different.

Disappointed this article didn't have more breakthrough news for chronic migraine http://migraine.com/blog/news/new-migraine-prevention-recommendations-from-the-american-academy-of-neurology/

Bird Watching and the Sun

We went out to the local Audubon center near us and had a picnic while watching all the great wildlife. It was wonderful and relaxing. We saw ospreys, herons, muskrats, a crane, swans, snakes and so many turtles! It is so fun to take my little one out into nature and teach him about the world. We had a impromptu packed lunch of sun butter and honey sandwiches (for me, peanut butter for them), Newman's Own organic pretzels and apples. It was delicious and migraine friendly of course!

Although by the end of the walk the sun was really starting to bother me. Its a big trigger for me. I was wearing a big wide brimmed hat and big sunglasses but alas it was not enough and I spent some time resting afterward with my heating pad, TENS unit, headache tea etc.
It was worth it though it was a wonderful time spent with my family. Its hard though when headaches seem to interfere even with the most simple outings.

Ginger Garlic Stir Fry

I have been really wanting some Asian food lately. In my head I keep thinking about how I could make that happen while still being migraine friendly- no soy sauce (sesame oil seemed to cause me trouble too) no fish sauces or premade sauces etc. I decided to try it and chose some ingredients that had big flavors and would carry the stir fry off without all the usual ingredients! It turned out great my husband gave it great reviews!

Ginger Garlic Stir Fry

1 pack of cut up boneless chicken thighs or breasts
1 bunch of baby bok choy
3 carrots
1 package of shiitake mushrooms
1 inch hunk of fresh ginger some diced some grated on a zester
4-5 cloves of garlic diced
cornstarch
water
Bangkok blend spice from penzeys spices
salt- used quite a bit more- I am not a big salt person but it needed it to make up for no soy sauce
sugar
rice of choice


Start rice! Cook according to rice directions I usually do 2 cups water/ 1 cup rice, bring to a boil then turn to low and cover and cook until the water is absorbed.

Cut up chicken and start cooking. I put a little garlic olive oil down in my wok first.
While the chicken is cooking cut the carrots, bok choy, garlic and ginger (mushrooms too if not presliced).

When chicken is almost done add Bangkok blend 1-2 Tbs, garlic and zested ginger.  When fully cooked add a half cup of water mixed with 1 tablespoon of cornstarch. This makes a sauce. Mix and get all the bits of chicken and spices from the pan into the sauce.

Add carrots. Sauce should be thickening!
Add some salt and a dash of sugar to taste.
Add some minced ginger.
When carrots are nearly done, add mushrooms cook 1-2 minutess add bok choy cook until the white crunchy part is cooked a little but still slightly crunchy.
Give it a final taste and adjust salt/sugar

Serve over a bed of rice!

Checking in...

I think I am finally on a break from smoothie making. I like them but have gotten kind of sick of them!
I have been eating oatmeal or toast and fruit instead.

Our CSA starts up soon, looking forward to some fresh magnesium rich greens!

Cooking around here has been minimal lots of naan pizzas, sun butter sandwiches, and fajitas. I did make one batch of corn chowder- substituting leeks for onions, and milk no cream. I also used my own stock:)

Picture totally unrelated other than we did a lot of cutting this week!

one down one to go

Tonight I will take the last dose of nortriptaline! Wish me luck! I slowly have gone down about 5mg a day from 75 mg so this is HUGE! I am also trying to get of Zonagram and am down to almost 50mg  from 200mg! I mapped the whole thing out on a calendar as it was getting kind of confusing. My doctor gave me a prescription of the smallest dosage pills to make it easier too. I am staying on propranolol though.

I am hoping for the best!

Just taking it day by day at this point! Every day that goes by that I don't have a headache feels like a blessing. I will never take those days for granted again. I am in no way completly healed, just needing to get off the meds:)

Have any of you gone off drugs with success?