Enter No Pain Relief…

Most of the people I have known for longer than 5 minutes know that I have suffered from horrible, painful, sometimes debilitating migraines. For those of you who do not suffer from these horrible things, I would not wish them on you ever. I finally got M to quit saying he has a migraine when all he has is a headache. He never understood the difference, he thought, like many do that migraines are just bad headaches. They are not. Migraine is a neurological disease. I am new to this concept myself.

I switched meds recently after a phone call from my neurologist on last Tuesday. He called on a day where I had a level 10 migraine. I could not focus on our conversation. I forgot what I had already said to him and repeated myself several times in the span of a five minute conversation. So, much so he wants me to get an MRI done to find out why my migraines have changed so drastically after the birth of my daughter, Charlotte.

Some days my pain is manageable. Of course my manageable and yours might be slightly different. I am able to function with pain up to a level of about 8.5 or so. Now, that does not mean I am doing things well. I am not, I am just barely able to get things done. When I am at this level of pain, my brain is in a severe fog and I will forget what I am supposed to do or even what I have done already. Even if it has been only about five minutes. For me, the brain fog is the worst thing ever because I pride myself on my memory and the ability to know what I need to get done. Some days, honestly, I can not remember my own address or phone number.

Some of my other symptoms of my migraines are: sensitivity to light, sounds, smells, and even it can hurt to touch me. Lately, I have been dropping things more than usual as well. Which kind of is a bad thing when you have an infant who can not get from one place to another without me picking her up and moving her. Those times, I take it nice and easy making sure I have her wrapped in my arms and not in my hands. I also have been more clumsy than usual , tripping over my own two feet more than normal, tripping over small things that normally would not bother me, and tripping over nothing essentially.

There are days that I make it through the day okay and I seem okay and then there are those days that I made it through the day and wonder how on Earth I made it through. We are supposed to go grocery shopping this evening, doing that for me depends on where my pain level is at that point. It is not unusual for me to not go at the last minute because my head hurts so bad I can not take it. Sometimes, I force myself to go anyway and those days are horrible.

I feel bad for my kids because most days I am not the fun mom. My kids are too young to understand what is going on with me. My two year old does know that sometimes mommy is in pain and he will rub my head to make me feel better, which makes my heart melt and breaks it all at the same time. Today I have to wash the comforters on the bed. It has been a while since I have done that. The problem is that the wash cycle is forty-five minutes long and I will forget what I was doing and it will sit and get all icky smelling.. so I have to try and focus on that. It is hard to do when you have two small kids needing stuff all the time..

Laundry is calling.

-Ciao!

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So Much Going On…

13322147_10154176154503350_2458884458488236793_nThere is so much going on I am going to try to get it all in this one entry. So take a break, grab a drink and relax, this could get a bit long… LOL.

First of all, June is Migraine Awareness Month. I am happy/sad to be talking about this. If you see someone wearing a migraine awareness shirt please ask them about it. We want to tell our stories and be heard. More than that we want people to understand what migraine is and not. I will try to get a fact post in this month for all you out there who don’t know what they actually are and what happens.

Secondly, Charlotte did well with the surgery last Wednesday. We ended up being admitted for a blood transfusion that day too. Luckily we did not have to spend the night. So now she goes back to the hematologist on the 6th of this month for a check and possible transfusion. When they tested her last Wednesday she was at 7.7 for red blood cell count. Which is not super low but below 8 so her doctor wanted to transfuse. Considering that her last check was March 17th and we made it that long with out a transfusion is progress but we are now back on every 2 week check schedule.

Today is her 6 month well check and shots. She lost about 7 ounces again so that will have to be addressed, but I think once we start her on solids she will start to gain weight like a champ! We are supposed to get the O.K to start that today too. So today is exciting!

On the 7th of this month we have to head to Lexington Speech and Hearing Center to have a consult on a hearing aid for Charlotte. While she did well with the surgery, it did not clear up the issue on the left side. So, this is the next step for her before she starts learning to talk.

Our June calendar is filling up more than it was already! I am supposed to have a chat with the neurologist tomorrow and I am not sure he will like what I have to say and honestly I am not sure I will like what he has to say to me! I will try to update tomorrow after that conversation 13344618_10206964912266245_9072397591098437694_nhappens and let you know what happened and what will happen going forth.

Jeff is doing so well! He is growing by leaps and bounds! Speaking of which he can now climb on and off the bed by himself! He also has started to jump, so now he thinks that is so cool he does it every where! It is cute to watch. He is getting so big and learning so much. I am just beside myself because I am wondering where my little boy went!

Jeff and Charlotte love to babble at each other, it is so cute to watch. I will try to get some video of it happening. It sounds like they are having a whole conversation sometimes!

M is doing well. He has gone back to work and is back at Drill. In fact we have had (2) 3-day drills that went so much better than I could have hoped for. I am glad for that considering AT is coming at the end of summer and it is for 2 weeks! We will be fine though and by then hopefully everything will have settled down medically with Charlotte and all.

Well, I think that is all the news for now.. At least that I can remember at the moment anyway!

-Ciao!

Neurologist Visit

Yesterday I had my neurologist appointment. Finally. I waited months for that appointment and I sure was not going to miss it! My neurologist was sort of surprised to find out that I have had a migraine for five months. Every single day since Charlotte was born. Ugh. Before that it was at most 3-4 times a month. We discussed what my headaches feel like and look like. All the symptoms that I have with them. We talked about the medications I have tried, which is not many recently. My issues with migraine medications is that most of them make you zombie like or knock me out. I can not have that with the kids being home with me. I made that totally clear yesterday and we settled on a plan for the short term.

For the next month I am on Topamax 25mg for the first week, it is one pill at night. After the first week, it is 1 pill in the morning and at night. The office is to call me in a month to find out if it is working for me or not. If it is not we have talked about admitting me to the hospital for 2-3 days and giving me IV drugs to break the cycle. I am hoping to avoid that because honestly, yea. I am to the point that honestly I will do what ever it takes to get rid of this migraine or series of migraines. I honestly have no idea what it means to be headache free. I have no idea what it is like to wake up in the morning and feel good anymore.

I am so tired of being reactionary when it comes to these headaches of mine. Let me be clear, I have been diagnosed with migraines. Unless  you have specific symptoms that come along with the headache, you have a headache and there are different kinds, but you do not have a migraine. One of my pet peeves is that someone who has not been diagnosed will say, oh I have a migraine. No. You have a headache. If  you can take over the counter things, most likely you have headaches. Although Excedrin Migraine is pretty good, but it only works for me if I catch it really early.

I feel bad for my kids because they do not understand that mommy has migraines and is in constant pain. I want to feel good again so that I can do fun things with them. I have basically forced myself to keep moving because no one else is here to do it. I wish I could pull the covers up over my head and sleep it off. On the good side, I have lost 5 pounds. I am so hoping that Topamax is the right medication for me.

Oh Man Am I Tired!

Charlotte Swing First TimeI am so exhausted that honestly most days I have no idea what day it is or even who I am. At least until Jeff yells at me, but even then he does not say momma. LOL. Charlotte is doing well, gaining weight so now we do not have to go back to the doctor with her until January when she is 2 month old. We switched her formula to soy because she was very fussy and gassy. It seems to have helped some, but she is still very gassy and fussy sometimes, but it has not even been a whole week on the new formula, so I am hoping that things get better.

M is doing so well with physical therapy, they said he might be running by March again. I am so thrilled because that has been his serious goal. Once he starts running again he can get into shape again and pass a PT test for the Army he can pick up his 5 and then we can assess what will be next for us. He truly wants to go back to active duty and I am totally behind him on that. Once he has his 5 he only has to be in that rank until he can possibly pick up his 6.

So hopefully some good things coming in 2016, we could sure use them!! Jeff is really loving towards his sister and loves to kiss her. In fact, it is hard to get him to keep his hands off her when she is trying to sleep! He is helpful to me by putting the lid on the bottle and taking it off too when I need it.

Today Charlotte is in her swing for the first time. Not sure she totally likes it, but it gives my arms and back a break from holding her. I celebrated by taking a picture of course. I will post it here when I am done.

Well, my mind just went blank, so I will go… cause I can not remember what I wanted to say. Seems like normal for me right now.

-Ciao!

Migraines Are Not Good For Childhood

I was diagnosed with migraines when I was like 15 years old. So, I have been dealing with them for many, many years and tried a lot of different medications with some horrible side effects to get some kind of relief. Sadly, some would work for a while and quit and some would just plain not work at all. At once point there was a medication where you would take 2 pills at the onset of a migraine and wait for about an hour and if it is not gone you take another pill every hour until it is. Honestly, I was up to 15 or 16 pills. It was crazy!

I have not taken a prescription migraine med in about 5 years, mainly because well, I would just lay down in a dark, cool room and go to sleep and most of the time this helped. Of course this is pre kids. But now I am back to meds for relief because I can not just lay down when I need to and sleep.

I do have some requests in case a pharmaceutical company accidentally stumbles across my blog and actually reads this entry ( far fetched, I know!).  Please Mr. Pharma could you make a migraine med that will not put me to sleep. Yes, I know there are some that say that they are non drowsy but when I take them I am out like a light! Also, the last med I tried made me tired, have severe nausea , dizziness, and other assorted side effects. Could we leave those out too? See, I am a mom to a 1 year old boy who does not understand migraines. He wants to play and laugh and squeal with delight and when mom has a headache, she can not handle those things very well.

I know that these requests are long shots because medication affects us all differently. I get that, but honestly I am so tired of suffering with these migraines. Yes,  I have heard of the botox treatment for migraines and honestly that scares me to death! Putting a toxic substance in my body for relief of migraines and it does not even work on every one. No, thank you.

Excedrin Migraine works about 60% of the time if I catch the migraine in time, but if I wake up with a full blown one, my day is pretty much shot. Like yesterday. I had a bad one. Horrible headache, dizziness, light and sound sensitivities, nausea, the whole nine yards it seemed! I am a very lucky girl that I have a husband who understands and he took care of dinner last night for us.

I hate losing days like these because my son gets one childhood and I do not want him to look back and remember that mommy had migraines. So I am trying everything I can to fight back and get some relief! I am much better today, I can at least function. I still have the nagging low grade migraine, but I think it is mostly weather related.

Oh yeah, that is another thing, the triggers. Ugh. I do not have many and I am pretty good at staying away from those that I can control such as certain types of foods, smells, etc… My biggest and worst trigger is something that I absolutely have no control over what so ever. The Weather. I cringe when I see a rapid change in temperatures coming or the barometric pressure changing rapidly from one day to another. I know these things will bring on a migraine for sure. I do everything I can to avoid them, the weather is one thing I can not avoid.

I am hoping on my newest doctor appointment that we will be able to work towards a plan that will help me beat these horrible headaches at least for a little while.

-Ciao!