After the long day I had yesterday I was not surprised when I woke to find my symptoms had increased today.
My migraine pain fluctuated throughout the day between a 6 and a 9. The cognitive issues and fatigue increased. I’m so grateful I can get medical marijuana, it’s the only thing that is helping my pain right now. It’s far from perfect, for a number of reasons, but if I hadn’t had it today there’s a strong possibility I would have gone to the ER for help.
Since I’ve started keeping this journal, (yes all three days..lol..) each time I do one little thing I take a mental note of it so I can make sure to write about it. Because of that, I now have a list of my little victories for the day:
I picked up some dishes left in the livingroom and put them in the kitchen, started to put them in the dishwasher but, found I could only fit one in so I started the dishwasher.
I picked up a few things left sitting around the livingroom and put them away.
I emailed back and forth with my Advanced Bionics consumer specialist about my cochlear implant processors dying. Proud of myself for taking care if this without Stuart.
I fed my dog and gave her fresh water. (This requires bending over which is very hard for me today. Kiki would have waited for Stuart, but she would not have been a happy pup)
I started prepping for dinner. I cut the meat into bite size pieces, cut up the leaks, made the marinade, and put it all together. I even put all the stuff away and cleaned the knife and cutting board. (Stuart did the rest of the meal)
I brushed my hair. I brushed my teeth. I washed my face. I moisturized. I took my medication correctly all day.
There’s a number of things I didn’t get done, like get dressed, but that was so not important today.
Tomorrow morning I’m going to a painting class with my niece. I’m trying not to worry that I’ll have a severe migraine. I am determined to do this with her. I missed her birthday party, and this class was my gift to her. (She wanted to do something artsy with Aunt Wendy) I don’t normally feel like I have to push myself through no matter what, but I dont want to disappoint this child.
Please remember when reading this journal entry my cognitive abilities are a bit dulled right now. Also, This is the first time I’ve posted from my phone, I works.
Recap. Let’s see, when last I left off we planned to go to Charleston, SC in September for our anniversary; there was a possibility we might have to move; and I was getting a hair cut. Turns out none of those things are happening or happened.
Trip. After researching a trip to Charleston it just didn’t seem like the smartest thing to do this year. The trip was going to cost us more than twice what we had originally budgeted for our trip to New Mexico, I’ve been to Charleston hundreds of times, Stuart really has little desire to visit there, we weren’t going to be able to see as many people as we’d like and still have a romantic trip…there were just too many things that said this was not the trip for us. We decided it would be best to take a second trip to specifically visit with family and friends, and we are going back to our original plans of going to Albuquerque and Santa Fe to celebrate our 15th anniversary.
Move. I’m relieved to say that we do not have to move, our landlords have decided not to sell the house right now. The house has a pool and the best time to sell is during the summer, there are a few things they want to do to the house before selling it and they wouldn’t have been able to get it done in time to get it one the market for the pool season, so they have decided to wait. That is a huge relief. Soon we’ll be house hunting. That can be fun, and or ahhhh. Hopefully, it won’t take long to find the perfect home for us.
Hair I ended up not getting my hair cut. It ended up being a not so good day and I just couldn’t go. I had been up most of the night with nausea, and when I don’t sleep the next day is precarious. I haven’t made a new appointment yet. I have a case of the nerves about it now. As much as my long hair is hard to wash and gets everywhere, it is very easy to just throw it in a pony tail, and I’m used to it. I think I’m a creature of habit. What if I really mess it up? When I was younger I’d think, “It’s hair, it will grow back” Now, my hair is much thinner, and I’m not too sure it will grow back. Damn I’m old. hahahah
Migraines. I’ve been on the new migraine preventative, Emgality, for a month now. I was told not to expect a reduction in migraines the first month. I talked with others and most on the boards noticed some difference. Here’s my experience:
In February I had NO migraine free days and took medication for 10 days (the maximum number of days allowed) . In March I had 2 migraine free days and took medication for 10 days. This month, I had 5 migraine free days, and I’ve taken meds for 7 days. This may not sound like much of a reduction, but I haven’t had 5 migraine free days in a month in as long as l can remember. My maximum free is normally 2, and I always take the medication for the maximum allowed number of days. This week I actually reached for a rescue med at the first sign of a migraine, like you are supposed to, instead of waiting until it hit an 8, because I wasn’t afraid I’d run out of allowed days before the end of the month. I took my second shot yesterday, cross fingers for me that May brings fewer migraines.
Bipolar Depression. This week I broke down and started a new antidepressant. I tried hard to pull myself out of this funk, this sadness, this feeling of utter worthlessness, but I haven’t been able to. I told myself it was situational, it wasn’t me, and I could get past it if I worked on it. I’ve been working with my therapist and I do have things in my life that can cause depression, but the situations, and my coping with them, are getting better, but the feelings aren’t. It’s time for a little help. I’m having very mixed emotions about this and I’m not sure why. I feel like I’m always going to be a bit off anyway. I’m never going to be normal. I’m always going to be bipolar. When do I stop and just say, this is how I am and it’s how I’m going to be. This is my normal. Live with it. No more medication tweaks. No more added medications. But I want to feel better.
As most of you know I’m taking part in the Ten Things of Thankful challenge. Simply list 10 things a week that you are thankful for, but no worries if you list less, or a bit more, the point is to get everyone to notice there is something to be thankful for. If you’d like to join in, just pop on over to TToT and add your post to the list, I hope to see you there.
This week I’ve decided to get back to basics, I’m so very thankful for:
Water. I keep a water bottle on my bedside table so I have water through the night. In the morning my darling husband always fills it up before he leaves for work so I have a full bottle for the next few hours before I get up. On Wednesday he took the bottle to fill and forgot to bring it back, this really made me appreciate that he does this for me every morning and that I have water available to me so easily all the time.
Scent Free Air. I went outside to sit in the sun one day this week and a bush was blooming. It is beautiful and a welcome sight, but it had a strong floral scent, that would be pleasant to most, but I have migraines and am very sensitive to scents; it was an instant trigger. I was very grateful that I was able to escape it when I came inside. I’m thankful I’m able to have a pretty scent free home.
Electricity. I’ve been through times when we’ve had to live without electricity for extended periods of time due to natural disasters, it was not fun. The biggest obstacle we had was no refrigerator. Everything in our freezer that we couldn’t eat fast went bad and we had no way to store any food or to get much food to be honest. We had no hot water, and no heat or A/C. (one of these power outages happened during an ice storm) These are all things you simply do not think about when you have electricity every day. When power goes out for a short period you are inconvenienced because you have no TV, computer….but when you have no electricity at all, you are very limited in life. There are many people who have no electricity at all.
Eye care. I went to the eye doctor this weekend, I’m so grateful that I am able to have quality eye care. It is very expensive, especially for my prescription. If I could not afford it my life would be very limited.
A home. I’m grateful I have a home. Many people do not have a roof over their head. Every time I leave my house I see homeless. It breaks my heart. I wish I knew of a solution to our homeless problem in America. What we are doing now is not working. We cannot just ignore it. It will not go away, it is only getting bigger. We are one of the richest countries in the world yet we treat our needy so poorly. We should be ashamed.
Transportation. I’m grateful that I have a car to get around in, even though I can’t always drive, at those times I’m even more grateful that my husband is able to take me places. I’m very grateful that I was able to drive myself to an appointment this week, something I haven’t been able to do for a few months. I plan to do it again tomorrow too!
A warm bed. Many people do not have a safe place to sleep. I’m grateful I not only have a safe place to sleep, but I have a nice place to sleep. I can be picky about my pillow and sheets, I’m so grateful for these things.
A loving husband, dog, and friends. I’m so thankful for my support, the love in my life means so much to me. thank you to all of you.
I’ll close with that today. What are some of the basic things you are most grateful for. I’m sure I left out plenty. Like the moon and sun….so much to be thankful for in this life is we just look.
but right now I have a migraine and I’m going to be grateful that I don’t have to go anywhere and I can go lay down in a very dark room.
I hope your week is filled with things you can be thankful for.
Today is Rare Disease Day 2019. Normally when I post about Rare Disease Day I focus on my rare disease, but today I’d like to highlight a disease I’d never heard of before earlier this month. Actually no one had heard of it before 2016 when Okur-Chung Neurodevelopmental Disorder a rare genetic disorder was first identified. This is important to me because of this little guy, and other children like him.
Rowan’s mom has been a part of my chosen family for over 20 years, so when they found she needed to be close to a neonatal unit for the last trimester of her pregnancy we were all too happy to open our home to her, her husband, and their little Rowan on the way. This is their story told by my dear friend Penelope:
My son was diagnosed with autism 3 years ago at age 4. But from birth, we knew he was special. Now we know why.
Things became complicated in my 3rd trimester. I was hospitalized with high blood pressure and suspected pre-eclampsia many times, and was induced the day I passed the 37 week mark. My son was born with very low muscle tone, and what the doctors called “dysmorphic features”…low set ears and eyes with epicanthic folds. They immediately raised suspicions about Downs Syndrome and geneticists at the hospital ran the tests they had at the time, including for Fragile X. They tested his heart. They couldn’t find anything in their testing and we were sent on our way.
Feeding issues started immediately. Low muscle tone and reflux. We went to measures that included thickening formula with a special thickener that had to made at just the right temperature, and he was prescribed reflux medication by the pediatrician. Things began to improve at about 18 months.
Things on the social front were delayed and different. I remember crying on the way home from my son’s cousin’s 2nd birthday party. They are about exactly a year apart, so the birthday boy turned 2 and my son had just turned 1. At the party of similar aged children, it suddenly hit me how differently my son behaved. As the mother of an only child, it just hadn’t been so obvious to me before.
My son didn’t walk until 22 months, after 4 months of physical therapy. Then we focused on starting speech therapy since he spoke a total of 10 words at age 2. He rated very highly on receptive language but almost a zero on expressive language. We worked hard and he began speaking single words, then phrases, but would only speak at home with us and seemed unable to speak in other situations. Selective mutism was suggested as a diagnosis. We were told he had a slow to warm up temperament. We were given the “developmental delay” label and enrolled in preschool special education services. We did speech, play, and occupational therapies. Meanwhile, other issues my son had included slow growth, gross motor delays, social and emotional delays, toilet training delays, chronic constipation, periods of low energy, sensory processing differences, and avoidance of peers.
The diagnosis of autism at age 4, while difficult, was almost a relief. It felt like an answer. Something to explain all the issues we uncovered one by one and tried to provide the right support and treatment for. We tried a mainstream kindergarten public school experience for him, everyone seemed to encourage inclusion and bringing services to kids in the class and selectively pulling them out, but the problem with sensory processing and other issues of autism mean that some kids, like my son, will struggle with the distracting environment, large class size, and rough and tumble and strict standards of a public school. Luckily, we found a private school near our home that specializes in providing an outdoor focused arts based intimate environment for kids with autism and other conditions. My son is in a class size of 3 kids to 1 teacher, and the environment is peaceful – a nature hike every morning and classrooms with neutral walls and plain wood floors, very low distraction and individualized attention – and he has blossomed and learned in this school.
Meanwhile, as part of a business trip with my company (that makes medicines for rare diseases) I visited a geneticist with one of our sales reps. In that conversation in discussing rare diseases, the topic of autism came up and when she learned my son is autistic, she encouraged me to pursue Whole Exome Sequencing (WES), that amazing advances were being made. Since we’d seen a neurologist the month before for suspected petit mal seizures, we asked for this testing on our followup appointment. The EEG did not show seizures in the time period they tested, but the neurologist agreed to submit the WES testing, even though he was realistic with us that only a small percentage of those tested get a result.
February 8, 2019. The day I clicked onto the portal to see new test results. The genetic testing was back. The largest word on the page was POSITIVE.
My heart stopped for a second. I couldn’t swallow. I held my breath and for the first time, read “Okur-Chung Neurodevelopmental Disorder.”
Roller coaster of emotions ensued. Sadness that we hadn’t known this from birth – selfish in the way that it would have made the path and understanding easier for us as parents. Relief that we had an ANSWER. So few parents of children with autism get an answer. Excitement that we can participate in active current research. Amazement that our son will be on the cutting edge for genetic autism research. Fright that there’s so much they don’t know, and happiness that there is something that they do. A feeling that we are no longer shooting in the dark, and have some idea of what to focus on and check for and pay attention to in future.
So many things go through your mind when you find out your son has an ultra-rare genetic disorder that has only been found so far in 50 individuals worldwide. Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life.
Genetic testing is experiencing an advancement at rates so quick that my son’s genetic disorder wasn’t even discovered until 2016. Just a few short years ago, Whole Exome Sequencing tests were very expensive and inaccessible. As the cost decreases, more and more children, especially those with autism, are being tested. Which means more and more will be diagnosed with rare disorders and syndromes. This will be so important to so many individuals and families, providing supportive patient communities, gatherings, research, and even cures.
When I first started seeing my new psychiatrist she asked me if I’d had genetic testing to determine which medications would work best for me, I hadn’t, so she asked if I was interested. Of course I was interested! I was then given 2 swabs to rub on the inside of my cheeks and off they went to the lab at GeneSight, within a few days the results were back.
You can read a lot more about GeneSight and see an example of what an actual test looks like on their site. To see a detailed example of test results click here. It will take you to a pdf. I was going to show you some of mine but mine are black and white copies and aren’t nearly as pretty as the actual test results, and mine has over 9 pages of information. (I think some is repeated to give more in-depth information about it, but golly, that’s a lot of information.) I will however talk about some of my results.
After receiving my results we started going though it all to see what medication therapies would be best for me. It was very surprising to me how many medications I’ve been on in the past that were listed in the “Significant Gene-Drug Interaction” category. I also found out that this test really didn’t show which drugs I would have severe side effects to. For example, all antipsychotics. There are a few that are listed as “Use As Directed” that caused me severe Akathesia (the need to constantly move) and muscle twitching, which can become permanent.
We went through all of the medications on the list for Antipsychotics, Antidepressants, Mood Stabilizers, Anxiolytics and Hypnotics, Opiods and Non-Opiods. I’m not really sure why I was tested for opioids and non-opiods but I will be taking that to the hospital the next time I have surgery. (hopefully that’s never)
I’ve been told I’m a complicated case. I’ve tried a lot of medications in the past, some worked for a while and stopped and some never worked. We started going through one that worked for a while first. Lithium. When we tried Lithium I started to show toxic signs before I got to a therapeutic dose. We tried Depakote, I felt better and got to a therapeutic dose but it caused so many side effects that I couldn’t take it. (my stomach hurt so much and caused me to have severe retching, it was most painful, and this went on while I was on antibiotics so I blamed it on the wrong drug for a long time, finally we figured out what the culprit was and I had to stop it.) So then we tried Vraylar, an Antipsychotic, almost immediately I started having symptoms of akathesia. It wasn’t as bad as it was with Latuda, but it was starting, so I was put on a drug to help control them. It did but I still had this constant hum that made me feel like it was going to start all the time and I was still a little manic. You may remember the post about me talking all the time. I saw my psychiatrist during that time and could not stop talking during that visit, it was most disturbing to me. I can’t even remember what she did to change my medication at that time, I believe she added another medication. I know at one time I was on five drugs from this one person….or was it six? I’m still on a ton, but I’m tapering off 2 so that will make it less and one of those should also take over a medication for a condition I’m being treated for by another physician, so that will take away 3 drugs all together. Score.
I’m sure I’ve completely confused you. It confuses me!
Let’s see if I can make a little more sense than I have been….yes I seriously doubt it too, but bear with me. The last visit I had, I took that gene test and was ready. I told her what I had taken before that seemed to work for a long time, Topamax, all by itself, but we got to such a high dose I has severe cognitive issues, so I’d like to add it to the Lamotrigine I’m already on, both of these are mood stabilizers, that way I don’t have to have such a high does of Topamax and shouldn’t get to the point that I have cognition problems. (I was over 400mg before now I will be at 200mg, much more doable I think) Topamax can also help my migraines and my Idiopathic Intracranial Hypertention, so that’s a great thing.
I’m also seeing another psychiatrist on the 28th for a second opinion. I’m not thrilled by how this has been handled, all the drugs just pushed on me, and at one point when I was at my worst and asked what to do if I was in crisis, I did not feel it was taken seriously. I was told to go to a certain hospital, but was not given the information. How is someone who is in the throws of a severe mixed mania episode supposed to remember what psychiatric hospital this woman spoke of to find out how to get there, and I was not in the frame of mind to ask her to write it down. I was a complete mess at the time. It’s times like that that patients really rely on their health care professionals, and too often they fail to live up to what is needed.
I’m still a lucky one. I have insurance and can actually go to a psychiatrist and get help, there are countless others out there who can’t. We often tell people to reach out when they are in pain, but if they can’t pay for help, they are simply turned away. This country treats their citizens like garbage. If it’s unsightly, throw it away.
Please support mental health facilities who treat those who can’t afford care, there are so many people who are homeless because they have no where to go for treatment. Take time to be kind.
Have you tried GeneSight? Would you if you haven’t? Do you think it’s beneficial?
I do think it’s a great place to start. It’s telling me if certain drugs metabolize faster or slower than they should, and well all kinds of things. Be sure to read more at their website if your interested.
June has been Migraine Awareness Month. I had planned to do a few posts about migraine, what it is, who gets it, how disabling it can be, new treatments….ect… unfortunately I’ve been having some severe migraines this month and simply haven’t been able to focus well enough to write and get all the facts straight. It’s not just the pain of the migraine that has stopped me, it’s all the other symptoms that go with it, the fogginess, nausea, insomnia, sensitivity to light, sound and smells….I simply can’t concentrate or get things done.
New Migraine Doctor – On Tuesday I saw a new migraine specialist. He’s with Banner Health/University of Arrizona’s neurology department. First impression, he was pretty thorough, and seemed to know what he was doing, however, there were some things he said that I felt were just rude, but it may just be his sense of humor that I didn’t get. For example, after we went through my history he looked at hubby and said, “Did you know she had all these issues before you married her?” Then he laughed a little and said he was joking, but honestly that did not make me feel good at all. But he did take the time to go over my records and listen. At first I felt that he was going to be a butt, because when I told him all my different types of headaches (chronic migraine, vestibular migraine, cluster headaches, and Intracranial Hypertension), he said, “I don’t believe it” He questioned if I could have Intracranial Hypertension on top of the rest. I told him I had numerous lumbar punctures and that diagnosis came from Duke, he seemed to understand then that I really have been diagnosed with these things, they weren’t just speculation. We went through a huge list of drugs I’ve tried and if they worked at all, and we discussed other treatments that haven’t worked (acupuncture, chiropractic, a ton of supplements….). He finally said, “So, it sounds like nothing has worked” and I agreed. (Oh, I was given a complete exam, testing all my reflexes, checking my optic nerve….he really was thorough) He left the room for a moment and came back with a gammaCore.
Using the gammaCore – The gammaCore is a non-invasive vagus nerve stimulator. It’s pretty darn cool actually. Most of what I’m including next can be found on the gammaCore site, you can read more about it there if you’d like. https://gammacore.com/
“gammaCore (nVNS) sends gentle, patented stimulation through the skin to activate the vagus nerve, providing relief from migraine and cluster headache pain in a different way than drugs.
The vagus nerve is an important highway of communication between your brain and many parts of the body
The vagus nerve plays an important role in regulating pain”
He gave me a demo and it was interesting. You take this little device and put a gel on the electrodes then place it on your neck, right where you’d check someone’s pulse, you increase the signal until you get the results you are looking for (a twitch of your mouth or side of your face) you keep it there for 2 minutes and it cuts off by itself. They say there’s a beep, but I can’t hear it, I just notice that it stopped, I don’t know why you’d need a beep to tell you that it stops, you can feel it. People like to give sounds for all kinds of things that really don’t need them, in my opinion anyway. After it stops on one side, you repeat it on the other side, and that’s it. That’s a treatment. If pain persist after 20 minutes, do it again. After 2 hours, if you still have pain, or if it returns, repeat a treatment.
I will be receiving my gammaCore in the mail in a few days. The first month is free, I don’t know how much it will cost after that. When it was first approved earlier this year Stuart called to see if insurance would cover it and they weren’t there yet. If it helps, I sure hope that insurance will cover at least part of it. You are supposed to use it at the first sign of migraine pain, unfortunately I am NEVER without a headache, so I need to use it at the first sign that it’s getting bad. I still don’t feel that the doctor understood that I have a headache ALL THE TIME. I actually plan on using it as often as I can to see if I can get some lasting relief, maybe I’ll actually have a day without a migraine! I am cautiously optimistic. If it doesn’t work, I haven’t lost anything. If it does work, I will have to decide if I can afford it.
One HUGE thing I hate about the gammaCore is that it’s disposable. Why can’t they make it so you can charge it or change the battery or something, having to replace this device every month is so wasteful and bad for the environment. I’m having a very hard time coming to terms with that. I can only think that they do it this way so that people will have to buy a new one each month, that’s just a rip-off. What am I supposed to do with all these used devices? If nothing else, they need a recycling program. (Yes, I will be suggesting this to them)
Medical Marijuana – I also had an appointment on Wednesday to get approved for my medical marijuana card. Medical marijuana is legal in Arizona and severe migraine is on the list of conditions that can be treated with it, so I decided to apply. I should get my card in a couple of weeks.
Full disclosure here, I have been using marijuana to help me for a couple of years now, but I had to rely on what I could get on the street, I don’t know the strains, or anything like that, so results have varied. Sometimes when the pain hits I can vape a little and it is gone, other times it just makes me feel funny, and other times it does nothing. I’m hoping that getting it from a dispensary where I will be assured of quality and will know what strains and hybrids I’m getting, I will be able to medicate more successfully; more pain relief with less high feeling would be optimal. After I started using a little every night before I go to bed (I made brownies) my vertigo has been reduced drastically. When I can’t get it, I have more vertigo again. This is not an approved condition in Arizona (Meniere’s is an approved condition in some states), but it should be. I can’t be 100% sure that it’s the marijuana that has helped my vertigo, but it would be some strange coincidence if it isn’t. It even helps stop an attack….if I start to have a vertigo attack I will vape just a little and it will often stop it, even if it doesn’t stop the vertigo, it stops the vomiting. I cannot stress how important that is. The only reason I will go to the ER with all of this (vertigo or migraine) is if I’m also dehydrated. Throwing up for hours on end will cause dehydration, I know that the marijuana has stopped me from going to the ER numerous times. I’m so very grateful I have found some relief through medicinals.
Now, it has taken me many hours to write this post, so I will close for now. Hopefully my head will calm down soon and I will be able to write more often. I would like to thank Lorraine for being so kind and helping me keep up my weekly Mindfulness Monday posts. They mean a lot to me and it was really hurting me when I couldn’t post. Thank you Lorraine, you are the best, I love you my friend!!
Have any of you tried the gammaCore? If not, would you?
How about medical marijuana, have you tried it? Did it help?
Family members can be your best friends, you know.
And best friends, whether or not they are related to you,
Can be your family.”
~Trenton Lee Stewart
*photo taken at Wendy and Stuart’s wedding (I’m the one in yellow)
Thank you to all who are members of my Ohana. I love you. ( Part of Hawaiian culture, ʻohana means family (in an extended sense of the term, including blood-related, adoptive or intentional). The concept emphasizes that families are bound together and members must cooperate and remember one another.’)
“Ohana means family. Family means no one gets left behind or forgotten.” ~Lilo and Stitch
“Maybe the reason nothing seems to be ‘fixing you’
is because you’re not broken.
Let today be the day you
stop living within the confines
of how others define or judge you.
You have a unique beauty and purpose;
~ Steve Maraboli
“Be nice to yourself.
It’s hard to be happy when someone
is mean to you all the time.”
~ Christine Arylo
“View your life with kindsight.
Stop beating yourself up
about things from your past.
Instead of slapping your forehead and asking,
‘What was I thinking,’
breathe and ask yourself the kinder question,
‘What was I learning?'”
~ Karen Salmnsohn
Always remember, you are doing the best you can; be gentle with yourself.
**self portrait by W. Holcombe. Please do not use without permission.