A long Overdue Update June 5, 2016

Its been about a year since I last posted on this blog. Thats really hard to believe and it makes me a bit sad because I love blogging but I have just been getting worse and I have been really trying to concentrate my efforts on school. My migraines are now non-stop, and I no longer have a couple of pain free days per month. This means every single day I have a migraine and they are usually on the moderate to severe level. This has been really hard to deal with. Over the past year, I have tried multiple preventative medications such as Lyrica, Gabapentin, magnesium, and vitamin B2 just to name a few. My doctor wants to put me on a clinical trial for a CGRP monoclonal antibody which has shown very promising results but I haven’t heard anything from that end yet. Even if I do hear about it, I don’t know if I’m ready to do something like that, its a bit scary and I know I am very sensitive to many medications. But we’ll see what happens.

Another thing I have been experiencing other than the migraines is widespread muscle pain mostly at night. I have extreme, deep, aching pain in my limbs but mostly my calves. The best way I can explain it is it feels like growing pain but I am definitely not growing anymore. Sometimes it is so bad, I can’t walk and I cry myself to sleep because it hurts so bad. The doctor I saw at school thinks it may be fibromyalgia considering my history of chronic pain. Fibromyalgia is often comorbid with migraines. I also experience allodynia which is a painful reaction to touch (which is not normally painful). Often my hair hurts, or my skin burns. I have an appointment later this month with a rheumatologist to figure this out.

On another note, I just finished school for the year and it feels so unbelievably amazing to finally be on summer break. I have pushed myself beyond so many barriers this year. I really put so much effort into my classes despite my pain increasing to daily levels. It has been extremely difficult but I cannot believe I have pulled through once again.

I am completely exhausted and I have been for a while now. When I get home from school or work or volunteering I have to take a 2-3 hour nap and I am still able to go to sleep at night. I wake up feeling extremely unrested, with a bad migraine and dizziness and nausea every morning. I thought this was all due to my migraines and stress from school. But, it was truly validating to recently find out that I am very iron depleted! This could explain why my fatigue is so bad. Of course I know that pain is one reason for the fatigue but now I know it is also due to this! I was extremely surprised to find this out! Its kind of strange because I am not vegetarian. Either way, the doctor says this could possibly explain the migraines increasing to daily, and the muscle pain and the obvious fatigue. This kind of gave me a little bit of hope seeing that taking iron supplementation may possibly improve my headaches. I am trying not to be too hopeful because I hate when things don’t work out and I feel this huge let down and disappointment. So I have been on iron supplementation for the last 3 weeks and I am not seeing any improvement of my fatigue or anything else yet. I do have pretty bad stomach cramps and nausea from it, but its nothing compared to the migraines. I do hope this does improve my migraines just a little bit. Its really hard having no pain free days anymore, so being in pain every single day with no break. It can be very lonely, isolating and depressing.

Now that school is out, I am going to try and relax a little bit and do the things I couldn’t do while I was in school. I hope I can blog more now that its summer! Thanks for listening and following ❤

This week: Gabapentin and an EEG November 9, 2014

So I went to see a new PCP, and she was very helpful and understanding. When I told her that most of the neurologists I had have given up on me, she told me that I am not out of options with her, and that she is going to help me. She had written me a lot of referrals giving me many ideas of how I can control my migraines traditionally and alternatively. She suggested I try the Gabapentin, and she gave me a lower dose to start. She also have me a referral to a nutritionist, acupuncturist and a referral to do an EEG.  She said that migraines could be disguised as seizures so she wants to do an EEG to see if everything is normal. Basically she wants to do it to cover all the bases, because all my scans were normal. When I walked out of the office and gave the secretary all the papers she gave me, she told me I am going to be quite a busy woman! I am going to be, but at least this doctor is trying to offer me some solutions instead of telling me I am out of options.

I started the gabapentin 100 mg last thursday despite my extreme fear of trying new medications. I posted on my migraine support groups on Facebook and this girl, had the best response in the world that I could have read before trying this new med. She made me feel so much better in the way that she was telling me all the positive things that can come out of trying a new medication. It was just what I needed to hear. Then I started typing in my migraine diary, a kind of mantra about trying new medications and the positives that can come out of it. Now every time, I will try a new medication I will read what this girl wrote me as well as my own mantra. Another thing I did before and after taking the first pill was pray, pray for no side effects, and praying that this would be the medication that helps me. So now it has been 3 nights that I have taken this new medication, I have been feeling a bit weird, increased heart rate and some dizziness and fatigue. I hope that as I am raising the dose I don’t experience any more/worse side effects. I am proud of myself for starting the medication though.

 I went for the EEG on thursday morning. It was worse than I expected because I am very sensitive, especially on my scalp and the process is putting an electrode cap on    the head, and filling all the holes with gel to make sure there is good contact for the signals being relayed to the amplifier. She scratched my ear lobes, and literally attached my ear lobes with electrodes onto the side of my face. That probably hurt the most other than the blunt needle going in so many places on my head with a lot of pressure. I can still feel the places where she poked my head.  Also, for about half an hour I was laying on a terrible cushion and my neck was killing at the end. The main parts of the EEG are opening and closing your eyes, hyperventilating for 3 minutes and then closing your eyes while high frequency bright lights are shined. The most uncomfortable part for me was both the hyperventilation and the lights. From all the various stimuli, I got home with a massive migraine.

 I do hope the results of the EEG end up being okay, I would be very surprised if what i actually have is seizures. I wouldn’t be happy to hear that because I absolutely hate all the anti-epileptic drugs like topamax, and lamictal. I do hope the Gabapentin actually helps me, and doesn’t cause me too many side effects. I also hope that as I try new alternative ways to treat my pain by possible eliminating milk and gluten that things will get a bit better for me. I feel a bit better knowing now I have some options, somethings I can do to help myself. I am going to do implement one change at a time though so I know what’s helping and whats not. First things first I’ve got to wait the “normal” 2-3 months to see if Gabapentin will be effective for me, and I have to wait a little longer than that because my target dose is at 900 mg and right now I am only on 100 mg. I like that I have started on a lower dose. No matter how many times I tell my neurologist I am very sensitive to medications, he always gives me the standard dose to start. I would rather taper my way up even if it takes longer. Here’s to a new start that I hope will help me experience some pain free days again!

The face of daily migraine October 15, 2014

I am honestly exhausted at this point. I have had this constant severe migraine that has subsided only for a couple of hours after taking medications, but comes right back a couple of hours later. It has been almost a week and a half that I have been in pain. This is nothing new to me, since I have migraines everyday, but its really hard when the pain level everyday is SEVERE.

Stuck in school with this migraine day after day

 

I am now sitting in school, on my break with my hands on my head in so much pain and I don’t know what to take anymore. For the last 4 days I have taken either advil, naproxen, or tramacet and the migraine keeps coming back. I am at a loss of what to do because tramacet is my rescue med and it worked yesterday with the side effects of leg stiffness and extreme fatigue and dizziness, and the migraine is back again today. Its at about a 7 or 8 now and I just realized I didn’t refill my stash of advil and now I only have naproxen and tramacet, and pantoloc with me. I guess I will just have to take the naproxen. I am going to take the naproxen without pantoloc because pantoloc may cause headaches and I took it twice this week so i want to see how I feel without taking it.

Its extremely hard to function day to day like this. I know I have to start my preventative (Gabepentin) soon since I am currently not on anything, but I am terrified. I have this extreme fear of taking new medications, having allergic reactions, or bad side effects. Every single day, I have had to go to sleep right after I came back from school for about 2 hours until I can function and do some homework. Even then, I wake up with extreme brain fog and still a migraine, but a bit less fatigue. The daily pain is exhausting my body and my spirit. I feel more down each day this migraine continues. I am starting to kind of feel like nothing is going to help me. I would be ecstatic even with half the migraines I am having now which then would be 14 a month because now it is about 28 pain days per month. I am so tired of living like this. I just got through some midterms and its like torture because I know I can do it but I am pushing myself so much through this pain to get through school and try to do well. My grades have suffered from these chronic migraines and I am so afraid I won’t get into med school because of this. I have done well in the past in college, but now in university I feel like I have to be at the top of my game to show my true potential and I am far from that. I don’t think taking a break from school will help as I don’t know when and if any preventative is going to help me or not and I want to continue living my life while trying new preventatives, but its not so easy. Every time I take a preventative, I risk it affecting school and my life because of side effects like cognitive decline or extreme fatigue etc. But I really have no choice if I want to continue school even in the shape I am in now.

I really don’t want to go back to the ER because last time I had a really bad experience. I felt like the doctor didn’t care and just dismissed me and said he is going to give the migraine cocktail and then I am going to have to go home. I went home in pain and woke up with even worse pain than when I came into the ER. I was also a nervous reck because I had so many palpitations while I was getting my meds administered that I felt really shaky and sick. They had to do an EKG and everything was fine but it wasn’t a good experience for me since it was unsuccessful and I didn’t feel like I was being monitored very well. There is the option of going to another hospital but I really really hate going to the ER, so I am really going to try to delay it for now. I don’t know what else to take to stop this migraine. I am going to take it day by day or rather hour by hour and see if I can break this migraine myself. I think I might also call my neuro, though I am afraid to call him because he prescribed the gabapentin in July and I haven’t started it yet so maybe he won’t give me anything to break the migraine until I ‘comply’ and start the gabapentin.

Am I a highly sensitive person (HSP)? September 22, 2014

Result of sensory overload

On one of the support groups I am part of on Facebook, somebody posted a link I decided to check out on migraine.com. Reading this, I realized this is exactly me! Its an exact readout of my personality and tendencies. Its striking! I know that migraines are a sensory disorder consisting of the brain being hypersensitive to stimuli. What kept me reading the post, was that this hypersensitivity is related to also being extra sensitive emotionally. I will summarize the article while also explaining how much it relates to me. The first thing I read was that people with HSP process more information and think about it more deeply. This is me exactly! As a child, my mom said I was very perceptive, noticing absolutely everything. Now as an adult I realize how much I think about everything around me and all my interactions with people. I always replay things in my mind. Sometimes its hard to get rid of those thoughts and focus on the task at hand. I also know that when I was a child I hated the cafeteria since it was too noisy, it was all too much for me. Most kids didn’t notice these things but I absolutely hated it. As an adult now I hate going to clubs because the sensory stimuli can be too much for me (lights, sounds, movements), and I have to step out and/or take breaks. Its like a sensory overload.

People with HPS also tend to: (From the migraine.com article, my experience is in purple)

• Be easily rattled when rushed or have a tight deadline: Very much me, although I I have learned to try and control my anxiety towards this and do things one at a time and try to think about the task and not focus on not getting it done on time. This is still difficult for me. At work, I was given very limited time to finish a task once and I freaked out and felt very anxious the entire time. I ended up finishing it but ended up with a huge migraine afterwards. 
• Avoid violence on movies and TV: This not so much relates to me definitively, but I know I can get very anxious when watching something stressful. I also feel very emotionally attached to characters on TV. If something happens to a particular character on a show I feel like I ‘care’ about them. 
• Need to withdraw to a quiet, private space on busy days to regroup: This is definitely me, when things get too crazy I need to just have a time out for myself and spend some time alone gathering my thoughts. 
• Arrange their lives to avoid overwhelming or upsetting situations: I often try to do this although the migraines definitely affect me trying to do this, and often I have to just go with the flow. The migraines prevent me from doing things when I want to do them which makes me more stressed, and this stress is unavoidable because sometimes the pain is too hard to push though. I am learning to go with the flow. 
• Be deeply moved by art or music: When I listen to a particular song with moving lyrics I can get attached to the song using is as a stepping stone to motivate me when feeling down. Its amazing how much I can make almost any song relate to me by listening to it deeply. Art is a huge part of my life. Often when I feel down or I feel a particular emotion I enjoy drawing it out. Its like I spit out what I am feeling on to the paper. When looking at artist’s work, I can also be deeply moved depending on how I look at it. 
• Have a “rich and complex inner life”: So definitely me.  I have a whole world nobody knows about inside. I think about absolutely everything. Even when I don’t look like I am thinking about much or feeling scared or anxious I don’t show it and its all inside. My mom always told me I was a very calm kid but I actually was a very anxious kid putting on calm face while worrisome thoughts flooded my mind. 
• Were called sensitive or shy as a child: yup, yup and yup. My dad still calls me sensitive. I was very very shy as a child. Everyone always described me as shy or quiet. 
• Find other people’s moods to be contagious: Yes again. I notice when my mom or sister, or grandmother is feeling down, happy, sad, angry, I can ‘catch’ what they are feeling. This especially occurs with my mom. I usually feel what she feels. I don’t really have much control over this one but I think I have improved a little bit. 
• Have high levels of empathy for others: This is so me. I can have empathy for anyone, even someone I don’t know or someone I don’t relate to. I care deeply about other people. When my pediatrician was going through hard times and had to have several surgeries I felt deeply empathic towards her and she is still always in my prayers. Any moving story or Facebook post about a kid with cancer, moves me and triggers my empathy complex on full drive. I care so much about people sometimes it hurts me. My mom says there is a limit to how much you can care about someone because you can get to the point where you hurt yourself. Even though my heart aches sometimes when I care about someone deeply, I still wouldn’t trade this empathy for anything, I feel it is an integral part of who I am. 
• Be emotionally reactive: Very. Although I tend to hide my emotions most of the time. I can act quite well even when I am a mess inside. 
• Cry easily: This one depends. I often feel like crying but I keep it in because I like to cry alone, having no one see me suffer from the pain. During sad movies I often don’t cry which is strange. I think I cry when something really relates to me personally. I do cry very often though, but alone and usually at night in bed. 

This article sums me up perfectly. It is very strange to encounter a perfect description of my personality but I can relate to every single one of the HSP tendencies. HSP is not formally associated with migraines but there are many people relating to it on the Facebook support group as well as on migraine.com. It would make sense that this would occur in line with migraines because of our sensitivity to all kinds of stimuli. This article doesn’t make me more stressed at all knowing that I have something else associated with migraines, it actually makes me feel kind of special and different. I like my personality. There are some things I have worked on so I am not so sensitive to everything, though it takes a lot of work. But I still think this personality is special because we can have so much empathy for people, and maybe possibly ‘feel’ more than the average person. I think thats pretty cool. I have to be careful with this kind of personality because it could easily hurt me but I guess its all about finding balance and learning who I truly am. I am only 21 so I still have so much to experience and learn about myself through my obstacles and encounters. Does anyone else here think they have HSP or some tendencies of it? Has chronic pain enhanced these feelings for you?

I’m Out of Options Apparently July 10, 2014

After my appointment with my neurologist yesterday, I felt more overwhelmed and scared about the future than ever. I cried myself to sleep last night because I was so worried and tired of everything. After going through the list I made of everything I have ever taken for migraines, He told  me ‘we are out of options’ so we are basically on to line 2 of treatment of things that were not in large studies but that may work for some. I went through line 1 of treatment of multiple preventative meds and nothing helped me, if not made me feel worse.  So he said right before we resort to botox, I will try you on Gabapentin (neurontin). I am so tired of feeling like a lab rat and this whole guessing game of trial and error. It is all so frustrating and so far the medications have done more harm than good to me. I was depressed for over 6 months because of the last medication I was on. I tried DHE and it made my migraine worse, triptans do the same. All I needed to hear yesterday was that I am basically out of options. I just can’t live with this pain for the rest of my life. Its just too hard, there is so many things I want to do. I am only 21 and I have tried more meds than my age. The neurologist told me I am part of the 5% of the population who are just generally sensitive to all medications. Though I am known for getting any and all side effects and being part of the rare side effects description, It was scary to hear this. I know I have to get out of this cycle and rid myself of this pain but is it worth experiencing so much heartache from so many side effects? I understood when I was diagnosed with chronic migraine that there is not any specific treatment for migraine so it is going to be a process of trying meds. It is getting harder and harder for me to do that.  Its also getting difficult for me to have hope in anything anymore. I am so scared of botox and all the terrible side effects like, not being able to swallow or hold your head up or move your face… 31 injections every 3 months doesn’t sound very pleasant to me. But I did  hear that migraineurs have found a lot of improvement from botox and that it is helping lots of people live their lives normally. I also know that with everything I have gone through I don’t know if I want to inject poison into the muscles of my head to paralyze them a little. I want something to help me, even a little without causing me so so many side effects, is that too much to ask? I’m tired of walking out of the neurologist’s office with 5 prescriptions in my hand over & over again, and nothing helping. I guess that I am grateful that he didn’t give up on me and is still trying to help me through this. I know this frustration will pass and I will just have to keep trying meds to get better…I am not on any preventives now and I think I am going to wait a bit before trying the gabapentin. Who knows? Maybe no meds is better? I’ll have to wait a bit longer and see how my daily pain is behaving without prevention. I am going to give my body a little time off of preventative meds.

My drawer full of meds

Distractions June 9, 2014

Lately I am having a very hard time coping with the daily pain. It has gotten to the point that the daily pain is no longer mild, it is either moderate or severe. This is definitely something that is scaring me and worrying me. I have been feeling okay emotionally. I am decreasing the dose of Inderal over 6 weeks so now I feel like I am not always depressed and sad which is an improvement. Most days I do feel down and out, but I feel like i have more energy now and sometimes I have really good days. I hope when I get off of it completely it won’t take long for me to feel normal again and happy. Last time I tried dropping this medication I ended up in the ER with palpitations and a terrible migraine. I know that I am stopping the med slower now which is helping, and that my ultimate goal is to feel like myself again. So i am willing to put up with the constant shortness of breath, palpitations and racing heartbeat and finally get off this med. I just want to feel happy again.

The pain can be unbearable sometimes and I have been taking the usual anti-inflammatory+tylenol option because I was told to stop taking triptans. I am trying not to think too much about the fact that I will be giving myself injections of DHE soon. It acts as a preventative and abortive but I am worried about doing the injections everyday at the beginning. My first step was to make an appointment with a nurse to teach me and watch me give my first injection and make subsequent appointments if necessary. But I don’t like to think about it much. I know it will be something I will have to get used to, and it will teach me some skills I will eventually learn in medicine so I’m trying to concentrate on the positive part: It is a great learning experience for me.

I am trying to distract myself with lots of things. One thing I have been doing a lot of lately is gardening. I absolutely love to garden! Usually as I’m gardening I am in a lot of pain, in sunlight, heat and doing somewhat strenuous work it is hard, but I truly enjoy it. It brings me pleasure to watch my hard work grow into a beautiful garden. My mom used to help me a lot with the garden because it was her dream. Now she is a bit too busy to work on it, so she put me in charge. I ended up loving nature just as much as she does. Its satisfying work because you get to benefit from growing vegis and herbs all summer long. One of the hardest things for me to do is the actual sowing of the ground, carrying big bags of soil and planting. The pain is not only in my head but in my back as well from the scoliosis. Though, when I really get into it, I forget about all the pain and just concentrate on the sounds of nature around me and the earth, and the digging and the planting, and how much organisms live the soil! I have met some weird looking things in soil! What I enjoy most about the garden is watering it everyday. It is my relaxing time. I put my ipod on, and I can water forever. Music and being outside are harmonious to me.

Summer Distractions

 Gardening for me is a great distraction from my pain, and it brings me joy and fulfillment that I actually get things accomplished and there is a final product. Don’t get me wrong, I work on the garden in little increments and start slowly and get used to it after a treturous winter.  I work on one part of the garden at a time. This is good for me since I have learned that I can’t do it all at once anymore, but I can still get to the final product at my own pace. I am very proud of my garden this year and I hope I am taking good enough care of it so we get an abundance of produce. That picture is not the whole of it, we have raspberries, blackberries, gooseberries,  strawberries and haskap berries! All of the herbs are in pots this year.

I also made some birdhouses with my little sister and we painted them for the backyard. I truly enjoy doing activities with my little sister. She is so talented and creative and fun to be with. I love art and I especially love sharing art with someone I love so much. Spending time with her always helps lift my mood.

Distractions do help take my mind off the pain, despite the pain always being present. I push myself to do different things because it helps get me out and gets me moving and it helps me enjoy life even with pain. Distractions don’t always work very well, but I find they do work to a certain extent. When I’m absorbed in something, my whole mind is into whatever I am doing. To constantly think about the pain being there is hard. Finding ways to distract myself has been interesting. I have learned a whole lot about myself through having chronic pain.

CGRP drugs- A promising new migraine Treatment! May 7, 2014

I recently read an extremely interesting article (migraine.com) on how there is progress being made in the development of a new preventative drug SPECIFICALLY  for migraine! This truly made my heart skip a beat from the excitement of hearing that something new out there, something that makes sense, and most importantly something that is made specifically for us and not for other conditions. I am starting to read more and more about CGRP and its involvement in migraine first on migraine.com and then by google searching it. I just want to give everyone interested a brief overview of what CGRP is and how it is involved in migraine.

So lets start with what it stands for. CGRP stands for calcitonin gene-related peptide. It is an amino acid protein that is released by the trigeminal nerve cells. The trigeminal nerve is a nerve that provides sensation or pain in our head and face because of its 3 branches that spread across the forehead, near the nose, and down the jawline. These nerves are actively involved in migraine pain because our brain itself is not capable of feeling pain. It is the nerves around our brain/head that when activated, provide the sensation of pain. When the trigeminal nerve is activated from a series of unknown events, the migraine is initiated. The trigeminal nerve then releases CGRP. The receptor for CGRP is very important and is the target for new drugs. Once CGRP binds to its receptor, that causes a whole other series of events that leads to the vasodilation and inflammatory processes of migraine. There seems to be a very direct link for between CGRP and pain especially in migraine and headaches. For example, when CGRP was given intravenously to subjects, a migraine or headache was induced. CGRP was also found in saliva and in blood serum of patients with a migraine.  This is a new step in figuring out the pathogenesis of migraine (how a migraine starts and the detailed process of why a migraine occurs).

 There have been three interesting studies so far that have illustrated the benefits of CGRP. The first study was done on subjects who were given a CGRP receptor antagonist called Telecagepant. The CGRP receptor was blocked by the molecule in the drug and this prevented the CGRP from binding to its receptor in the first place. This further prevents the initiation of migraine.  Originally, this was being studied as a preventative drug. However, during phase III trials, liver toxicity was found in the subjects and this serious side effect prevented the continuation of the study and further studies. More recently, it has been determined that giving this drug as a preventative is toxic to the liver, but giving the drug as an abortive for migraine could be very successful since it is 15 X less toxic to the liver than triptans. If the drug is not given long term it can be safe and not cause liver problems. As an aside,  Triptans work in the first place to increase Calcium concentration in the cells which lead to a decrease in CGRP. Botox is also involved in possibly decreasing CGRP.

Two more studies are looking at the effects of subcutaneous injections every two weeks or a single dose of an IV drug for prevention of subjects with 4-14 migraines per month. This drug is different than the Telecagepant because this new drug is not blocking the receptor so that CGRP can’t bind, it is actually destroying the CGRP by a biologically created antibody. That antibody acts against CGRP and destroys it so that it cannot bind to its receptor. This method is far more safe than using an antagonist long term. This drug in the intravenous study showed a 66 % decrease in migraine after 24 weeks and 16 % reported being migraine free after 12 weeks! In the subcutaneous injection study after 12 weeks, there was a 63 % reduction in migraines. 

I am very excited about this news since I feel like this is a step forward in understanding how a migraine occurs in the first place and what happens during migraine. It sounds very promising since so both trials have been going very well. Scientists are starting to think outside of the box in order to come up with a specific migraine preventative which is very exciting. Its nice to know that for once, the drug is being made specifically for use in migraine patients and not for other disorders. The studies show some promising results and also some new molecular advances in the field of migraine. Despite this being an inconvenient/uncomfortable treatment of either IV injections or subcutaneous injections every 2 weeks, scientist are hoping that the administration method will be improved to one injection per month and hopefully the patient can learn to do this on their own. There is currently no oral treatment for targeting CGRP. I am really hopeful about the continued research on CGRP and the possibility of an upcoming new kind of preventative that is made specifically for us and that so far, is very effective!

 

References

http://migraine.com/blog/promising-new-migraine-drugs-target-cgrp/

http://migraine.com/blog/what-is-calcitonin-gene-related-peptide-cgrp/

http://migraine.com/blog/what-is-calcitonin-gene-related-peptide-cgrp-part-2/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134175/

ER again April 18, 2014

Firstly, I would like to apologize for not blogging in so long. Its just been so long since I have been myself. I don’t know who I am anymore due to medication side effects affecting my emotion and of course the pain that has been going on daily again. So this is the story of how/why I ended up in the ER again. This is the 4th time. I could have gone many more times but I didn’t and right now, I don’t know if it would have helped me or not.

My sister making me smile despite my pain

All of the sudden the propranolol that I take to prevent my migraines stop working 2 months ago. My migraines became close to daily. My Neuro wanted to me stop the Inderal because of the fact that its not working and since its causing a depression and exercise intolerance among even more things. So I slowly reduce the dose and then things get even crazier. Then it became daily SEVERE pain that doesn’t let up with the use of my usual abortives and new ones. I really hate gooing to the ER so its usually a big decision for me to go or not. Is it severe enough? Do I think it will help me? I ended up going because I started crying from the severe pain that I was experiencing at the time and I decided that sometimes I wait too long to to to the ER. So this time I went to the ER after 4 days of severe pain rather than 2 weeks. When I got there they gave me my usual cocktail Intravenously of maxeran and decadron but this time they also gave me toradol. They were all given in dextrose solution due to the saline shortage. Something actually caused me to have very uncomfortable palpitations and they had to do an EKG on me. In the end it was okay and I was sent home in pain that has not resolved completely but was much better than when I walked in. I always walk out of the ER feeling as if I will pass out, trembling, shaking, cold and warm and anxious. I had probably felt this way due to the fact that I did not eat very well for a couple of days. Overall, All that didn’t help me at all because the next morning, I had a very severe migraine. Usually out of the 4 times that I have went to the ER, it has helped me for up to two weeks of either no pain or just a headache, which is a big relief. I think maybe what has helped me the most in the past was the boluses of saline that they hydrated me with. This time I got no saline and was probably dehydrated. Maybe saline infusions would be helpful for my migraines. Overall though, this time I really think i went for nothing. I am scared because the ER is my last option. I mean what else is there to do when I am in that kind of pain. Who will help me? What can help me? i have been trying to reach my neuro since that visit to the ER and he called me back only when my phone decided to break down. When i fix it I hear his message. Its always like that! Now i am waiting to see if he calls me back like he said. The pic below is me in the ER with me plastic sunglasses over my regular glasses due to the weird lighting. My sister came with me as usual and my grandfather also came by and stayed with me the whole time. I think My mom just can’t see me like that suffering. My dad faints at the site of anything medical. So I go with my sis who is 17. She is an amazing person for doing this for me. i wish she didn’t have to do this at all though.  There was one guy who they gave morphine to and they brought him near our area and he could not stop burping as a side effect I guess. My sister freaked out and it grossed her out so much, but at one point we just started laughing. The ER is a scary place and I really appreciate her coming with me. My sister always knows how to make me smile even when I’m in the the throws of pain. My little sister was also so concerned since she couldn’t speak to me when i was there. But she wrote me the cutest letter on a paper that she taped inside my laptop and it means so much to me that she cares so much about me. We are like best friends. She even lowered the brightness on my computer before i got home. I have the best family in the world but I wish that they don’t have to see me suffering and that they don’t always have to be worried about me.

Understanding Pain March 30, 2014

 

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My little sister’s words really touched me a couple of nights ago. As I was kissing her goodnight and sitting by her bed, she said some things to me that I will never forget. She was so ecstatic and hyper about being pain free and her stomach finally being better on antibiotics for parasites. She said its hard to remember what its like to be without that pain. Then she said “Amanda, now I understand what you mean when you say you have to appreciate every day without pain.” This really surprised me, I mean I know she is very smart but she really pays attention to me and everything I ever said. The funny thing is, I have never said those words to anyone, but she must have read them on the quote board in my room.  It made me realize how much she looks up to me. I told her she is so smart! Although I never want to her to understand these things, she kind of does in her way. Pain is pain. She also told me her pain is probably a quarter of my pain. But I told her that you can’t compare pain if you can’t feel another person’s pain. Then she said but if you got parasites you would feel my pain! I said ya I guess in that case, its possible! She is hysterical. I love her so much. I hope she never has to experience any more tummy aches and that she never experiences chronic pain.

Medication insecurities March 6, 2014

I am planning on going on a summer trip with a bunch of people my age from all around the world. I am definitely excited to go but my worries are overriding everything….Filling out the medical forms is making me depressed. I realized that even though I don’t see myself as limited in any way, to others, I am because of my migraines and because of the medications i take for them. For example, just the physically demanding nature of the trip is a factor that worries me because one of my meds makes me less tolerable to exercise. My migraines are a different story entirely and can also impact the entire trip. I also have to put if I have any mental conditions and I have anxiety which is controlled with another medication. Filling out this medical form makes me scared that I won’t be able to go on the trip because of these ‘limitations’. I know I have to be realistic, but I also just want to live my life. I want to enjoy these years of my life where I should be able to do these things.

My teacher for my lab in school also made me realize something about myself that i didn’t pay much attention to before. We needed to do EKG’s and respiratory monitering on each other. We were 3 per group and the guy in our group agreed to be the first subject, the girl in the group had a cold and so I was supposed to be the second subject. I don’t really mind, except when the teacher started to explain the subject’s tasks etc. He said, ‘I’m sure everybody in here is a healthy, normal subject thats not on any kind of cardio/pulmonary drug…” I thought to myself ya uhhmmm….At this point my anxiety kicked in and I thought to myself what do I do? I’m not going to tell my lab partners I’m on meds. I do not want to tell my teacher…. I had no idea what to do and if i should tell someone. The experiment required the subject to breathe at different rates or hyperventilate and doing these things make me breathless because of the meds…maybe something would have turned up on my EKG if i would have done it. I felt left out since I would have volunteered to be the subject of this experiment but my teacher said that if you are on any medications and he highly doubts it, then you obviously cannot participate. We ended up not having enough time for a second subject so i was very grateful.  This week we have a cardiovascular lab and I am thinking of asking my lab teacher beforehand instead of having to embarrass myself in front of everybody.

I realized I am very insecure about myself being on medications, taking it in front of others or talking about it. I know its something I can work on and being on medications is something I have to do to feel better. I cannot judge myself in the eyes of others.  If it makes me feel better it is worth it to take it. I have to try not to be embarrassed by something that is helping me. I feel like there is also a lot of stigma about taking medications in general and this is unavoidable for now. I just have to try to change my mindset I think. I just want to be that ‘normal healthy subject’. I want to be the one that can exercise without feeling like I am going to die, or getting up from a chair without almost blacking out. I feel older than my years no matter what i try to think. I could handle all the side effects  until last month, when my migraines started to get worse again. Then I started rethinking things.

I hope i do get accepted to go on the trip. My doctor has to fill out a proper medical form other than the one I submit for myself. I hope because of these ‘limitations’ i will not get rejected to go. It is an experience of a lifetime and I would hate for migraines to get in the way of it. It would make me even more down and out.  I hope that by being on the medications I am on it will be worth it. I thought it was. Now i am not too sure that the benefits outweigh the side effects….

 

PS: not me in the picture but it is what we did for the lab!