MIGRAINE GANGSTER

WHERE DID YOU COME FROM? Like seriously my migraines began cropping up again out of nowhere. I mean there have always sort of ‘been there’ but they have been masked with my migraine preventor that I take daily. I do not want them to take the dosage up because it has truly been affect my memory and I also have been wanting them to take them dosage down for the last year especially when about 6 months ago I noticed when I accidentally didn’t take it for 3 days it caused severe swelling in my ankles and made them the size of grapefruits. So I definitely know I need to be tapered off. However, I want to know if my migraine medication that is used for when one actually occurs on top of the preventor will suffice me now? I usually have to take 2-3 during an episode and it comes like a GANGSTER, kicking butt and asking questions later. Like someone just said come here meet my sledgehammer!

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I mean seriously I get maybe 1/2 a day of relief and i try to rest/sleep and continue for a day or so and see if it has gone away.  Then I have to take another to get another 1/2 half day and then sometimes/finally before it can completely come back I may have to head if off with one last one to get rid off it because I am too afraid of the possible and dreaded 60 day migraine again. Yes this has happened before I it was the worst thing EVER. The bad part is that the prescription I get only comes with 9 pills so that’s 1/3 of them right there and it’s NOT cheap. With this happening almost every month again this is not good. Luckily I am going to see the expert and talk with him and hope he can shed some light on the situation.

The other issue is the meds do make me a lil loopy too. The preventor  (Topamax) cause loss of memory and can cause some other issues like blood clots and so it makes it hard when you already have a clotting issue to come off the high does of aspirin. Then the additional in case of migraine (relpax) makes me feel strangely out of it after I take it until I go to sleep if I can even go to sleep after I take it. I mean like high!!!

I mean it is a pain med so…

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But durn if some nights I haven’t already had some pain meds or I’m super sleepy and man the week before last rubbing pizza cheese on my teeth and making tents with my pizza crusts let me know I was high. I mean I usually realize it after one good random act but still with the filter gone it still takes a second and it’s usually TOO LATE when I realize it…

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I mean I can’t lie and so I don’t enjoy the feeling once I get past the nausea…

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My husband just says lets just take you to the room and put your to bed and he either is annoyed or giggling…usually the latter. He never says before you regret doing something because I never would only because I would likely laugh at anything I did. Why not, life is too short!

 

Migraines. The silencer.

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Many people who have never experienced a full blown migraine say one of two things, they surely cannot be that bad… or are they really that bad? People who have dealt with people or lived with those who have had them realize that after having so many of them the pain must be real the symptoms must be real and that after doing the research and seeing others like them in the doctor’s offices and hospitals, it is more serious than they may have ever suspected. In some cases it can mean more serious underlying issues.

In my case, I have a family history of migraines. I did not know this growing up. I had a fairly normal neurological history I felt until middle school. I started experiencing head aches that became more frequent. My mom would give me extra strength tylenol. I would easily recover. Sometimes it was simply that I was hungry or tired from all the things I was doing and that would solve the issue. However, when I got older and got to high school I began having ‘optical migraines’ where my vision would become fuzzy and it only affected my eyes. It sucked. Those became more and more frequent. I had glasses and contacts but taking them off/ out did not help. Nothing really did. I just had to ride it out.

Then they began…MIGRAINES. I cannot say I remember the first one exactly, but I can say that I remember thinking it was a headache but much worse and telling my mom that the light hurt and it hurt when I moved. She said I had a migraine. And I said what it that. After that I never really had to ask ever again…I fluctuated between headaches and migraines for about 6 months. I always knew when I had one. I do not get regular headaches anymore and I do not know why.

When I get a migraine it is always on one side of my head (right or left) and I am light, sound, and motion sensitive. It will not go away without medicinal intervention and they use to stay the same strength without waning until for many days. Now it will undulate but still will not go away until I take medication and still hang around for days. I suspect the reason it undulates is because of both my MG and because I take an aspirin every morning in addition to my migraine preventor each day; which is different that what I use to do a for the last 15 years.

My longest migraine was 60 days. but most of my migraines last 3-5 days and come 1 to 2 times a month. However, since starting my migraine preventor 3 years ago it has been 1 time a month for about 1-3 days. And the migraines are now at about 80% strength instead of 100% strength.

Yes, I want to miss work, and stay in my bed in a dark room and never move again but I can’t. When I was in undergrad I did this. I was absolutely crippled by my migraines. I could only afford to take imitrex (which I am now allergic to) once the migraine hit and nothing else worked at the time. I hated it because I had to take the nasal inhaler and it would drain down my throat and tasted horrible. But it was that or be crippled and possibly end up in the hospital again. That happened once while at school. I ended up having ‘cephalgia’ as the diagnosis but in addition I am pretty sure I also had a panic attack as they had to put me on 2.0 ml of oxygen because I could not breathe since I was in so much pain and could hardly see, was vomiting from the dizziness, and every time someone spoke it was like an anvil struck me in the back of the head. My blood pressure was 160/90 when they took it. Normally my bp is 106/60 so that freaked me out even more.

I was crying and my parents were at home in bed while I was in the hospital at school. I was scared. I just wanted to go to sleep and have the pain go away. It was not a good night. Those of you who have never experienced a migraine I urge you not to take your friends and family member’s condition lightly…this is a neurological condition that can mean so many things. Have them go to the doctor if they have not been to be sure it is not something more serious. However, even if it is not…A MIGRAINE is STILL SERIOUS! People are very fragile in this condition even if they power through like me. They are doing everything in their power to have a normal day while in excruciating pain that physically affects them and causes high blood pressure, fast heart rates, irregular breathing, and so on. That person is giving you all they have that day and it should not be taken lightly.

Mentally and emotionally they are giving everything they have as well as it takes great concentration and effort to do everything that day. they have to work twice as hard to remember things and focus. More energy is exerted on every task. So please be considerate. I’m not asking you to go easy per se but just be mindful of what it takes for them to be there and do all they do when they could have easily called out and left you in the lurch that day. That means they think more of you, their co-workers, and the company to push on despite how they feel. At least that is how I feel! Now I will take me and my migraine into my office and get on my conference call with my director now. Have a great day guys!

UPDATES WHOO HOO

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So these were the updates I was waiting on! Though we have a long road ahead of us. I was just glad to hear some good news. I gives me new goals and another reason to come off this recent SALT rush. I have been hitting salted snacks pretty hard lately which is not like me.

So I gave up all nightshade foods about 2 years ago and around 3rd quarter of last year I noticed that after accidentally have a few of these foods it did not affect me and that I may be able to add a few back so I did somewhat slowly then altogether. I have been eating them pretty freely since then and now. I I have noticed that I do not feel like I did before. I do not feel as if my MG is flared by any means but health wise I feel icky. so I think I will at least back off some. I think as usual everything is okay in moderation but I went overboard and somewhat incidentally because I had not had my favorites snacks and food out of necessity cold turkey in over 2 years.

The new is that we have to see several specials to begin the process to have a baby but we can start the prenatal vitamins which we have to have in my system for at least 3 months before trying to conceive. The doctor said the specialist could say everything is fine and you can come off everything in 2 weeks time but if we have not started the vitamins now then we are are prolonged. So though I doubt the specialist will say this we can at least begin the vitamins. I hope I find some tasty gummy ones because I am not a fan of ‘horse’ size pills I have enough big pills I take everyday. We will see though.

Of the specialists to see I am seeing a man who has help write a book on MG Dr. James Howard whom they call shifu, lol. He will see about changing me from cell cept to something that does not suppress the immune system and cause birth defects or possibly taking me off altogether for pregnancy. I have met him before.

I also am going to see a neuro OBGYN (though I have a OBGYN). He will make sure that both my Mg is adhered to but also what I can be on for my migraines during my pregnancy and pain management for that. I am currently on a high dosage migraine preventer daily and this must be discussed.

Lastly, I am to see an ophthalmologist. I have some unbalanced pressure in my eyes and though they think it may be something minimal they want to be sure. I have never had diabetes any other condition with MG I am really healthy so they just need to make sure my eyes are not showing more strain due to my MG.

So if I even got a green light to immediately from all these doctors, which would be a big if, the earliest would could start would be April. However, I as keen as I am do this as soon as possible while body is still young and strong for an MGer I still have things to sort out personally. I will keep you guys updated! I know there are many young MGers out there who wish to have children who are following this and want to know how this works. I also want to remind them that each person is different just as with regular people and pregnancies but I will chronicle things as much as possible.

MG and Migraine Update

So before MG my migraines never ebbed they would stay at the same strength, ONE STRENGTH 100%! It did not matter how long they lasted 1 day or 60 days (which I have had a 60 day migraine). Now luckily with MG (ironically enough) a disorder causes my migraines to take on a different characteristic, I’m happy but REALLY, lmbo. This one was the longest one I have had in months possibly close 9-10 months as this was the last time I can remember having my migraine preventor meds increased.

I appreciate the likes, comments, and concerns regarding my post about migraine woes this past week. It has been a struggle to carry on with normal activity despite the migraine. I have light, sound, and movement sensitivity as well as physical pain on the right side of my head. I also get motion sensitive and yet I have to pretend that none of it is happening at work. Most people had no idea except my boss who knows when I am quiet something isn’t right, LOL. I am excited to be nearly done with this thing and glad that people cannot tell either way. It means I was still able to put a smile on people’s faces no matter what and that actually made my day Friday!

Inception

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I have been living in a world of strange falsehoods and awkward moments in the last few days. I have not quite been able to decipher what has been reality and dream. I am sure some of this has to do with the strong painkillers at night, my MG, stress, and sleeping with the television on at times. I am having dreams within dreams like the movie inception. I am not sure when I am awake or asleep and I have no idea at times when I have actually said/ done things at work or home or not without asking. I keep huge to-do lists and check lists because they actually soothe my anxiety to see things get checked off them; however, when you are unsure if you actually did them or not it really throws you for a loop. I hope this migraine goes away soon…It all started with this thing! I haven’t had one like this for a long time. I do not like taking so much medication but I have to in this instance. I already take a daily preventor (topiramate) and when I have a migraine I am supposed to take relpax but I tried tylenol instead and that didn’t work delaying the inevitable. Then I tried norco again delaying the inevitable and now I am breaking down to take the relpax. As you can see this is probably good reason for the crazy dreams. I did make sure though that I spread the medications out over a period of 6-8 hours each time over the last 48 hours. I just want this thing gone.

Migraine Preventor and Memory Loss

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When you start losing everything you have to start looking at things as a sign to slow down and think! Take a mental inventory of everything each time I go somewhere. Do I have the basics? Do I need something more for this trip? I ran into this issue as I had to start upping the medication for my migraines as without reading the side effects memory loss began to be an issue. I was worried at first that it was a side effect of MG. However, as I was already in the habit of creating to-do list because I love to see things get checked off them it only made it more fun for me each day to continue to make more.

The down side is making sure that surprise events do not screw up my routines. Surprise events include someone calling while I do my morning mental inventory to be sure I have all my things packed. Some people say do it the night before…the only problem with that is more people are active then, I get more phone calls then, my husband is home and I am more distracted. In the morning, it’s quiet and my husband is either sleep or gone for work already so I get that time to meditate and get things done.

Moreover, at this time period versus when I was first regulating to the increase in the dosage I know longer have the fogginess that was accompanied by the migraine medication (topiramate). That was the worst as I felt as if I was not fully awake and could not think clearly. Now I just grab a bit of chocolate or make sure my diet is very well-rounded and some good exercise and it works pretty good. On the worst days I may have to snag some heavier caffeine like a soda (Dr. Pepper). But I feel as if I have mastered the preventative migraine meds. I pray I will not have to go off them when I decided to have a baby, lol.

It is the only thing that has helped after many trials over the last 4 years and being on different on the spots meds over the last 8+ years. I think we have a winner. Now if I could just help my husband remember things though he is not on any medications, LOL

MG and migraines

Some meds have the side effects that cause migraines or headaches. Considering that I already have a string history of migraines and a 60 day migraine brought me to my neurologist in the first place that eventually led to the diagnosis of my MG I would say it’s pretty serious. I was already on a migraine preventor before I was diagnosed however, everyone with MG is not.

migraine fogThe downside is that I cannot tell if my fog I feel is strictly from MG or the topiramate that I use and neither can the neurologist. The neurologist is not overly concerned as this was a warning and it it doesn’t overly interfere with my quality of life but it can be quite annoying. I wake up and it can take me longer to get ready some days when I am in the fog. It can take me longer to recall things or I forget things easily.

To combat these things I have tried to use tactics I started long ago with my organization skills that have helped me, only I use them more often and even on my mobile devices. I use checklist (to-do list), sticky note apps on mall my computers, and I carry my planner with me everywhere I go. I let my co-workers, friends, and family know if you did not see me write something down, I will not remember. Moreover, if I do develop a migraine, even with the preventor, I am pretty much crippled. I want to be left alone, in the dark, in a quiet place. Though this is rarely able to happen because I still have to work, I take relpax to help combat this and try to keep pushing through my day.

Sometimes to push through the day even when I do not have a migraine I try a bit of sugar or caffeine (soda usually). If anyone else with MG experiences similar ‘fogs’ I would love to hear your experiences.