Sunday, June 28, 2009

Bad Migraine Week - facial changes

It's been a really bad week for me with my migraines. I haven't been able to do much of anything. Yes, I have accomplished things at work and have been able to fend off the pain enough to get work done, but not like a usual week. I have a constant migraine, but the pain level has been so increased this week I am having a hard time standing it. I hate to be a complainer, but enough is enough and sometimes you have to just cry - even when you know it will make the migraine worse. It's weird sometimes you feel like if you cry it will ease some of the built up tension and swelling but it's a fine line between that and making it worse. When it's really bad I don't even need to cry outright, the tears just come without any crying. My head swells so much - people can see the difference in my face.
Which is another thing. I look at pictures of myself only a year and a half ago and I look different. It isn't aging, it's the constant pain. I want to look like me again. Now, I don't like my picture taken because it doesn't look like me. I'm swollen in the forehead and temples and it's like my facial structure has changed. I'd love to figure out how to look like me again. I do some research on the web but I don't find anything about this subject. I'm sure I can't be the only one. Everyone notices that I look different now then I did before and just put it to the fact I've been in pain so long it shows on my face, but I think the structure has changed - or maybe not the bones, but my facial muscles.
Are there facial exercises or creams to use to bring back the muscles to look like I used to. I never thought of myself as beautiful, but now I appreciate my looks before because they seem so far away now. I want it back.
Same for my weight - I'm not overweight but I was last summer with all the high doses of steroids I was on for so long. Gained 30 pounds in three weeks alone. Now, I don't expect to be the weight I even was when I was thirty, but I do want my shape of body back. I've lost 15 pounds of the 40 I had gained. Again, still in the normal weight range for my height and all, but I don't look like me or fit into my clothes. And I still have the steroid pooch in my stomach. I walk but not as often as I'd like to - the weather or the sun or my migraine often interfere. I can't do aerobic exercise because my head will have none of that. So, I mostly do yoga and stretching - things that are low impact.
I have to be patient and keep looking for solutions and focus on the primary one - getting to a low level of pain daily. I've given up on pain free. I just don't want to be in this much pain all the time - I'm strong enough to deal with pain everyday, I just can't do this level all the time and I have been doing it so I guess that's not true, I can. But, I hate the side effects and the way it's taking away my life.

I need to have some relief so I can keep my strength and spirit up. The migraine massage I had last Friday helped during the massage -but came right back. Of course it's been either super hot and humid or stormy weather so maybe that's to blame. But, I always try to find the reason and it seems the real reason is just my brain - it hurts - I have a faulty link somewhere up there that triggers pain for too many reasons beyond my control.

I am going to try to have faith and I am doing more writing - starting this blog - as well as a journal and that helps relieve some stress. Writing my life story - if even just for me. And there's work which keeps me busy and gives me boosts of confidence. And there's my incredible husband who cares for me and takes awesome care of me. My beautiful children who don't always appreciate me, but that's the age - their 20 and 16 and I didn't appreciate my mom till later - I can't wait for the older one to turn 25 and appreciate me again. My 16 year old still loves me a lot and isn't as hostile. The 20 year old just needs to get out on his own and start his own life without me and look back and remember and appreciate me from his own life. That's what I'm holding on to.

Anyhow - here's to hope - hope for less pain next week and hope for feeling less depressed and more hopeful. This Too Shall Pass - my grandma always said. I miss her. Wish she was here - and I know that she is here with me or up there pulling for me and doing her best to send me all the help she can. And to my aunt Becky who I dreamed about a month ago and felt her presence so close - I know they are here with me.

Ok - off topic there - Hope is the Word. God Bless

Thursday, June 25, 2009

Work today - CPA stuff with migraine

Got a lot of work done today - a lot of tax stuff - mostly international FBAR questions and answers and FAS109 review for a client for which I came up with more questions than answers - that's the way it works mostly. Oddly, or coincidentally, I had just read the other day about an issue with FAS109 and CSV of officer's life insurance and then I offer to review this FAS109 calc for someone - a client I've never worked on and they have the issue. Funny how life gives you those moments so that you can be better at your job. Always learning - that's why I love my career.

Great distraction from the migraine when you get really involved in an issue that's technical and you have to research and think it through. Same with the FBARs with all the hubbub right now with the IRS having teleconferences where they change the rules in the middle of the game and you are consulting with people on how to deal with what's what.

My head hurt a lot today and more now that I have stopped working. I get migraines from let down of stress. Another trigger. But I am proud of the work I did and now will deal with my head - calming it back down. Tomorrow I get my migraine massage!

My history and health treatments

I started having migraines in my early teens - had them about 4 times a year until my twenties. By my mid20s I was having attacks at least once a month and generally around my cycle. By the time I hit my 30s I was having them at least 2x a month and a little in to my 30s at least 3x a month. By my 35th birthday I was having attacks at least 4-5x a month. And then as of January 2008 - constant - but the pain changes from moderate to severe.
I've always had indicators - ears ringing, gray spots growing to block out vision in one eye, or sparkly lights before the pain started. Now that it's constant, I get those indicators when it's about to get a lot worse.
Before they were constant they lasted from 3 days to 2 weeks.
So, early on I did nothing but deal with the pain, hole up and use ice and try to get through it. When they got to be monthly, since near my cycle we (drs and I) tried high doses of aleve around the time the pain was going to start and heavier meds - like stadol - when it got severe. Once they got more often, I started down the path of all of the imitrex type meds - they would work at first, but eventually wouldn't work at all, I would have to be switched to a new one - Relpax, Maxalt, Frova, Imitrex, etc - about once a year or longer when they stopped working. The new one would work for a year or less and then stop working. This with my regular doctor before I saw a neurologist.
Then, I went to the nuerologist. All kinds of tests were run, we tried a lot of different preventative meds - some with some success and others not - nortryptaline, topamax (read dopamax cause you get stupid on it), visteral, nameda, propanolol (lowered my blood pressure too much) etc. For attacks, I used axert and imitrex. I went in for shots when it was really bad, worked the first time, didn't the second, third time they added something else to the shot and it worked, fourth time, didn't work so we gave up on the shots.
Then came in the insurance company and cut my supply of imitrex, et al to only 4 pills a month. Well that became the beginning of the end. I was forced to have migraines that went untreated. Which allowed the migraine to settle in. (They say it takes 3X the amount of meds to get you out of pain once it's imbedded then if you take meds at the start of the pain!) To prepare for my wedding I went on the week before a dosage of steroids every day plus Frova - got through my wedding great and most of my honeymoon but not all of it.
Then came the constant pain - the one that hasn't ended. We tried the things I stated before and then went to another specialist neuroligist that works with my neurologist - who also has a migraine specialty - the new specialist put me on IV treatments - 4 days each time and we did it twice. The IV treatment would reduce the pain, but it came back every night or by morning when I woke up.
So, next we went to hospitalization here in KC. Constant IV - DHT, steroids, pressure point injections, a lumbar puncture, more scans of my head and neck and I don't remember the rest of it. It didn't work. They did find vasospasms in my brain and a small blockage in my neck. With that I was put on Verapamil for the vasospasms and went off all imitrex type meds.
So, next I was referred to either the Diamond Clinic in Chicago or Michigan Head Pain & Neurological Institute. I went to MHNI - they had success and taught me a lot. Went through many, many more tests. I had neck nerve blocks twice which worked for a day and then pain came back. I was there 3 weeks and they tried various meds and combinations for preventative and abortive until we found a mixture that reduced my pain. I left with a 1-2 on a 10 scale and kept that for about six weeks until I went back to work and my life and then the pain went back to where it was before - staying between 6-8 with jumps to 10s. My doctors here have continued to modify my mixture of meds seeing what works best as preventative and abortive. I also had more pressure point injections, another nerve block and then a nerve burning (not the technical term but was supposed to last up to six months - it didn't work).
I now also see a massage therapist once a week who does a migraine head massage only for about an hour which gives me relief during the massage but pain comes back within hours and never is fully gone. I also see an acupuncturist who has been able to really reduce the pain for a couple of days after treatment but then pain comes back.
My neurologist was concerned I wasn't sleeping right even though I was sleeping a lot - not getting to deep restorative sleep because pain continued while I slept and I started having more episodes of "Sleep Paralysis with Hallucinations" something I'd also had since a teenager which get worse and more often in times of stress. But, I never connected them to migraines. Turns out they are a symptom of migraine with aura as well as a potential symptom of narcolepsy.
So, I was referred to a sleep specialist with a migraine background - worked at MHNI for 5 years - and I did a sleep study (tortorous) and came back with a diagnosis of narcolepsy for which I am now on Provigil - it's been 3 weeks of that.

Other medical conditions my team has to muddle through along with migraines: 1 - hypothyroidism severe - was not diagnosed until my 20s because I've always been thin and they didn't think of it until I was put into a mental ward for depression - it was regulated fine from 25 - 36 and since then has been acting up and I just had another blood test - normal and regulated 6 months ago, but is back out of whack and they have to increase my synthroid again now - that will start next week. 2 - vasovagal syncope - my heart is "allergic" to adrenaline - if I get too much adrenaline pumping due to nervousness or pain or whatever, my blood pressure drops to almost nothing and I pass out and go into convulsions but come to within 20 seconds and after 20 minutes am back regulated again and ok but tired for awhile after. 3 - familial tremor - my hands shake and sometimes arms and legs but my mom has this too and they say may get worse. I was being treated for it but lowered my BP too much so we are ignoring it for now and focusing on migraines. 4 - low blood pressure - apparently common amoung migraine sufferers. 5 - anxiety attacks. 6 - I know I'm forgetting something and 7 - now possibly narcolepsy although maybe not but the provigel should help anyway with my sleep patterns and seems to be working and not harmful - I haven't had an episode of sleep paralysis since taking it so less scared to sleep at night and less tired.
Meds I'm currently on
Synthroid; visteral; verapamil; keppra; chlonepen; baclofen; thorazine; skelaxin; provigil; toradol shots - not all every day some just as abortives. yes, I've tried indomecithin (sp) and it didn't work.
CoQ10, magnesium, D1000, calcium, mutlivitamin, Bcomplex and B12 shots once a month, as well as Rice Sprout now which has natural CoQ10 and Bs that are easier to digest.

That's the most of it although I'm sure I've left things out inadvertently.

Hanging in there and my team of doctors and therapists are vowed never to give up on me which helps - I'll never hit a point with them where they say they give up and there's nothing else to do. I am very lucky to have the doctors I have. I also see a therapist once a week to deal with chronic pain management.

This Too Shall Pass - Hope Springs Eternal

Wednesday, June 24, 2009

Migraine +++ and onset signals and hope at last

Today was a very bad day for my head. On a scale 1-10 I went from a 7 on Saturday, 8 on Sunday, Monday 10, Tuesday 10, today 20 - I guess I overestimated the other days and have to rethink them cause today I hit the top of the pain scale. So, I guess it was Sat 6, Sun 7, Mon 9, Tues 9 and today 10.
It got so bad that I lost sight in my left eye - the side the migraine likes to sit on - which has happened before and is just a precursor to the amount of pain that is coming down on me. Sometimes it's my ears - I have tinitus (ringing in the ears) most all the time now that the migraine is constant - before only when I had a migraine. But, when the volume increases dramatically, another sign that the pain is about to be unbearable. Besides the blindness (really gray spots that grow to block out my vision in one eye) and the tinitus, I get other clues like seeing sparkly lights for about 20 minutes before massive pain kicks in.
Anyhow, I got depressed and lost sight of the big picture. Started saying things like "I know I'm dying this time" which I've said before (ask my husband) and aren't true. I try not to say that but then I almost can't keep from saying it because it seems so true THIS time. I rethink the constant migraine as not being so bad - at least it isn't this bad all the time or I wouldn't make it.
I've been in and out of hospitals and have a good network of medical staff and family and friends to help keep me grounded and hopeful, but I lost sight of that today.
An article and the quote at the end of the article really helped. - the quote at the end from Helen Keller “All the world is full of suffering. It is also full of overcoming” I repeated over and over and over to myself along with my usual from my Grandmother - "This Too Shall Pass." Thanks to Jeanne for sending me that tweet.

I feel more hopeful again, but am worried when the medication eases up if I don't take more that it will get bad again. I need all the support I have and can get.

I'm back to my positive self and am lucky for the friends and family I have as well as all my doctors and also to my job that is so understanding. You know there are a lot of jobs that wouldn't be as understanding and don't bother to learn about migraines and put you in a category of sickly or whatever. I get to take some of the credit - I am very good at my job - I'm a tax CPA specializing in international tax, FAS109, and highly technical transaction issues. So, I am an asset and they know it. They need me so were open to listening to my migraine story and open to supporting me. I know others are not as fortunate and I have heard rumors at work from people that don't me - the whispers of is she hungover, why's she wearing sunglasses, does she shake cause she's on something, etc. - luckily my bosses understand and don't listen to these because they have listened to me and heard from my doctors who were good enough to explain my condition to them in a letter.

So, I have much to feel grateful for and to feel proud about. I like me - which is a good thing because I'm going to be around my whole life.

Tuesday, June 23, 2009

CO Q10 and migraines

I've been on Co Q10 as a supplement to help my migraines along with magnesium. I'm on high doses, but learned something from my acupuncturist. Rice Sprout - has natural CoQ10 so it's easier for your body to digest as well as all the vitamin B's which migrainers often are low in - at least those I've met - but you can only get supplements for a few of the B's not all of them.

I get my Rice Sprout from my acupuncturists office but I'm sure you can get it other places. One heaping tablespoon in about 4-6 oz of water put it in a water bottle so you can shake it up. Tastes like rice milk - which if you are a vegetarian like me you may have tasted before. I used to and sometimes still do have rice for breakfast like oatmeal - rice with milk and a little sugar in a bowl - it tastes like that - pretty good, but you can put it in a smoothie if you don't like the taste.

I still take the supplement pills, but like that I have a natural way to get it that my body more easily absorbs.

The confusion migraine

Pain is bad again today. I took a Toradol shot yesterday so need to wait and not take another today or I won't have for later in the week since I can only take 2 a week.
I think sometimes part of my problem is that I wait to take meds until the pain is so bad the meds don't work as well. I guess I think this because doctors keep telling me I do that and it takes 3X the normal amount of medication if you wait for the pain to get full blown. But, I keep thinking to myself - don't waste it you may need it later - and I don't want to be overmedicated.

Anyhow - not the purpose of today's blog. I wanted to talk about the other side of migraines, besides the pain. The confusion, inability to concentrate and feeling unable to get motivated. I think these are overlooked sometimes as a reaction to the pain. But, studies show that you can have these migraine symptoms without the pain and it's still a migraine. Yes, I'm in a lot of pain today but I was yesterday and still got a lot of work done. Today, I have the lack of concentration, lack of motivation and confustion that makes it hard to force concentration and keep working. So, then it's harder to ignore the pain.

All of these symptoms can happen like I said without the pain or without the high level of pain and I think people have a hard time with this. Non-migrainers have a hard time understanding and you are often thought to just be lazy or hungover - well let me tell you I have not been drinking! Migrainers think it's just them, they are depressed from the pain or tired from it going on all the time. But, it is a symptom in and of itself. I may be tired of the pain or depressed about it but the lack of being able to concentrate or being confused by simple things is not the normal me - that's the migraine affecting my brain.

It helps to know that it isn't just me because knowing it isn't me - that I'm feeling lazy today - means I don't have to feel badly about it - I am sick, I have a disorder and I'm having symptoms from that. I don't have to get down on myself and say "Hey, stop it and get motivated!" I can say I'm having a bad migraine confusion day or however long and be honest with those around me and my ability to be effective. I know I'll need to review any work I did today tomorrow or when I feel better for mistakes or miscommunications. It's not that I'm not strong enough, it's that I have a disorder that's acting up - having an episode which is usually how I describe it. And I can tell others that I'm in that state so they don't over expect things from me. And I can not be hard on myself and tell myself that it will be better another day and to relax and flow with it. Getting upset just makes things worse.

I didn't get much done today for work. I know why and it's a valid reason - not laziness. I will be better and do better tomorrow so I'm going to take the cue and do less today and meditate more and do things that take less concentration to take my mind off the pain.

Don't be hard on yourself if you are a migrainer, do what you can and know your limits.

Monday, June 22, 2009

I got a lot of work done today but I don't know how. Might have to redo some tomorrow. It's amazing how a brain can still work when it's in so much pain. I think after so long of being in pain you can put it aside to do what you have to do even though you still feel it and then when you're done it comes back to you consciously and you feel all that much worse. But, thank heavens for being able to still function.

I worked on the FAS109 training I'll be teaching in July and worked on a lot of foreign tax issues for others at work - answering a lot of questions. I really enjoy both of these aspects of my job. I am so lucky to be able to work from home because the pain seems unbearable.

It always makes my head hurt even worse when I take a shower when it's this bad but I feel it can't get much worse and now that I'm done with work, I'll do that - take a shower - and it will be worse and then I'll take my strong medicine and meditate and relax and try to flow with the pain.

I have degrees of meds I take, 1 those that I take as preventatives for migraines - which if they do work and I know they do then without I'd be screaming all the time and taking my head off which is where I was last year, 2 those I take when the pain starts creeping up on me and starting to get worse - not so strong that you'd notice a change in me, mostly muscle relaxant and visteral to open the blood vessels, 3 those I take when I need more pain relief - heavier meds and 4, the toradol shot - which I can only take twice a week but is the only thing that consistently brings the pain down so I am careful to only take it when absolutely necessary.

I don't take any of the normal migraine meds anymore after years with doctors and tests - no more imitrex and the like - they didn't work anyway very well for me and the doctors found I have some vasospasms (for which I take Verapamil) so they don't want me on anything that constricts my blood vessels. So, I'm on nothing which causes rebound headaches at least. Not that I'd notice since the pain has been continuous for so long now.

Anyhow - all that said and vented, I'm off to my shower and then to the Toradol shot because I need it now and the shower will make it worse so might as well do that first.

I am proud of myself for getting some good work accomplished today and happy and grateful that my husband is home in case I fall or pass out - which happens from time to time with the pain.

More later - keeping the faith that pain is not who I am!

Sunday, June 21, 2009

Migraine is bad today - missed my father-in-law's lunch. Going to take a shot of toradol, do some meditation and yoga and listen to music. Don't know why today, weather's okay and my diets fine. My brain is just wired wrong. At least I'm smart - maybe the two go hand in hand. If your an overthinker like me and heredity gave you that it may also have given you the pain along with it. Good with the bad. This Too Shall Pass.
Called my mom this morning to wish her happy father's day since she did the raising of us kids as a mom and a dad.
Part of my meditation is not fighting the pain but just letting it flow through me and flow with it. Need my medication to help me get to that point of being able to meditate. Right now, I think the movie Pi where the guy with the outrageous migraines took a drill to his head sounds about right, but I need to not think down that path and try to relax and flow with it.
Father's Day - I wish I had a relationship with my dad, but I don't. Many reasons, not the least of which is that he doesn't believe in my disease of migraines. I learned at the Michigan Head Pain and Neurological institute ( when I spent three weeks there last summer that it truly is a disease and to think of it that way. I don't get migraines for no reason. They don't come upon me because I'm depressed or because I'm tired or because I want them. They aren't just in my head. Well, they are but you get my meaning. My dad doesn't believe in them - doesn't believe I'm really sick. But that's just one reason we don't talk. I had problems when I was young causing depression and hallucinations and he thought that was all in my head too. Then I was diagnosed with hypothyroidism and as they regulated my thyroid those problems went away too. So, it was real. I'd stopped talking to my dad at that point - or more precisely he'd stopped talking to me. I love my dad very much and miss him, but he isn't a part of my life and something I have to get used to. I still cry at movies with dads and daughters or dads and sons or at weddings during the father/daughter dance as a longing for something I don't have. But I have a strong family on my mom's side of the family and am still close to my dad's relatives - my grandparents and aunts and uncles. I've just lost him and it's sad but not the end of the world.
I have to think the same about my migraines - they are there but not the end of the world. Sometimes so bad I wish it was the end but that's the wrong way of looking at it - they haven't taken everything from me and I can live a good life - not the one I thought I'd have, but one after all. I meditate and try to let the pain just flow through me, not fighting it but floating above it and letting it just be. Not always easy but it helps. I distract myself by doing things that I can do and laugh as often as I can. I take my preventative medicine and I take medicine when the pain increases to a level where I need more. I learn to live. I take herbs and vitamins and acupunture and migraine massages. Trying to retrain my body that the pain doesn't have to live there all the time. I avoid triggers and live my life in spite of the pain. I have a good life. A great job and a perfect husband. Two beautiful, smart and wonderful boys who love their mom.
I have my friends - a network of people who believe in and support me. I have a team of doctors that truly care and won't give up on me.
I have a lot, but I don't have my dad.

Saturday, June 20, 2009

I am trying every method - regular and alternative medicine - to deal with my migraines. I have a great team behind me now not one of which is willing to give up on me and I don't know what I would do without them. I have my neurologist, general practicioner, sleep doctor, therapist, accupuncurist and massage therapist. Everyone communicates with each other and everyone's goal is the same - help me with my pain. I take medications, hormone (synthroid because I'm HypoThyroid), vitamins and herbs, rice sprout, essential oils, meditation and yoga. I need it all on my path.
Then I have my wonderful Husband, Rod, who takes the best care of me. I wouldn't make it without him. It makes me cry to understand how much he loves me and so grateful for how well he takes care of me.
I have my job, I'm the primary bread winner in the family, as a tax CPA which is very difficult and stressful, but takes my mind off of things and my new role due to my migraines as being a consultant on international and specialty tax subjects, teaching and working in the national tax office, lets me work from home - my cave - where I can best care for my head. I have nothing to complain about and yet I do - the pain - what would the world be like without it? I'll never know.
I had two things to do today - go to my nieces dance recital and go to my mom's dart tournament. It's raining on and off which is bad for my migraine and I started out this morning not doing too well. I try to be careful now making plans and everyone knows I may have to back out at the last minute. I'm happy to say I made it to Gillian's recital - was good once it started, in the hallway before hand there were lots of perfumes and flowers upsetting my migraine - to the end I did pretty good and then there were swirly backgrounds that got the beast in my head going again. I did not make it to my mom's dart tournament. I needed to go home and rest and take meds. I also use essential oils - see - their MGrain is excellent and relaxes my head some which is good - I hate relying only on meds.
As you can see by my profile, I have suffered migraines since my teens. They got more and more often as I got older. They last 3-5 days and sometimes 2 weeks. Then, January 2008 - 18 months ago, I got one that hasn't ended yet. It ebbs and flows sometimes so bad I can't see or hear, most times with all my meds, I can function - not like I used to but I can function. My job has been good to me over it - not all employers are. I went to the Michigan Head Pain and Neurological Institute last summer and learned so much and when I left my pain was at a decent, livable level. But life back at home increased it back - now I go day to day trying to get along and enjoy life and not let the migraine get the best of me.