March 31st, 2016: I remained at baseline NDPH all day which was a great relief compared to the days leading up to this visit. I took an Amerge just to make sure that a migraine didn’t decide to join or that the NDPH didn’t increase.
I had such a great day. My friend Dawn rode down with me and we talked all the way. I drove and I talked and my head pain did not increase…it was wonderful. I even drove home and talked on the phone for a good majority of the trip home since Dawn had food coma and I was trying to prevent going into food coma 😉
I was really worried about my appointments today because I had to tell them about Mayo Clinic, but it turns out they already knew because they all had to sign off on the records to go to Mayo. They were very supportive and were anxious to hear any findings from Mayo. What a relief! And anxiety for no reason. Oh well, I just didn’t want them to think I was going behind their back…I really just wanted to have someone look further into what might be causing the constant head pain. Almost 15 months now! Never how I imagined it would be, but have done my best to take it in stride. So glad that my Dr’s at MHNI had my back about going to Mayo Clinic. I leave in 5 days.
In between Dr. apts Dawn and I went shopping to 5 Below….great store, but you really have to limit yourself or you could spend way to much money without even knowing it. And then we were going to meet up with my high school friends Kristen and Steve and their son Eli. Unfortunately they were delayed and we only got to give hugs, say Hi and good-bye. But the food at Olive Garden was awesome. I hadn’t been there in so long.
Oh and I stayed awake all day!!! Big deal for me really! Thanks for making the trip with me Dawn…it was much needed girl time!
I was told that it would take at least more than once to apply for social security disability insurance, so when I received the letter awarding me SSDI today, I was so very grateful. I still have long term disability that will run through December of this year (at least the balance of what I was already getting minus SSDI). Very relieved and I won’t have to submit anymore paper work until December for review. So for that it was a good day!
On the flip side, the migraine side, the daily life side; my New Daily Persistent Headaches have been really bad lately and very persistent. So much so that walking through a store, using a computer, watching TV, talking or driving are major triggers. And when the NDPH are bad, the worse the triggers cause an increase the head pain. The constant pain in turn makes me very tired, so I sleep a lot (16 hours a day). I think the meds I am on are also contributing, but the constant pain also contributes. So the only reason I am writing a blog post is because I did a Toradol shot.
In addition tonight I had an allergic reaction to something in the house, something I ate??? I don’t really know what caused it this time and it was the itchy eye, congestion type of allergic reaction. I took a Zyrtec, in addition to the Toradol and put a cold pack on my eyes. Great combo 😛 But starting to feel better now.
2/2/2016 Yesterday I had my follow up with my Dr’s at MHNI yesterday.
I woke with a full blown migraine. I took my morning meds and an IMITREX, put my IceKap on and slept for an hour. When I woke up I felt so much better, thank goodness, because I had no idea how I would make it through the day. Gideon took all of his meds like a champion this morning (thank goodness). He had to go with us to the Dr. appointments because he couldn’t go to school, I couldn’t drive and we didn’t want to expose anyone else to his multiple illnesses. So he got to hang out in the car with us for the day. He is all set with electronics, movies and his new little stuffed animal. Then as we went to all get in the car, we had locked our one and only set of keys in the car. Luckily Dan is a pretty handy guy and we still had a metal hanger. Car unlocked, and only 15 minutes late. Then I downed some ice tea (caffeine) to further help knock out the migraine.
My neurologist changed the triptan I was on (Imitrex) to a triptan called Amerge for an abortive med for the classic migraine, hoping it will have less side effects. We also discussed adding Flexeril to my preventative meds for NDPH. He had read an article that people with NDPH have had great success with Flexeril, so I will be starting that tomorrow. We will see how it goes. It is a low dose so hopefully I won’t have to many side effects. The last change to my meds is to increase my migraine preventative medication, Robaxon to its maximum dosage to see if I had any better luck at a higher dose. At my next office visit if my migraines haven’t gotten any better, we will try a new preventative med. I didn’t want to add a new medication before our vacation. If the increase in this med doesn’t work, we try another at another at my next appointment. The goal is to find a med that will break the cycle of the migraines and NDPH and prevent further head pain. I also now have the option to make an apt for nerve blocks in my temples as needed every 6 weeks which thus far has been a miracle block. I get an entire week of pain free.
2/3/2016 Today Gideon and I had a whirlwind day. Josiah had a delay in school, so we drove him to school, so Gideon and I went to CVS to return our late Red box movies..ugh, we have to stop doing that! And then I realized I forgot my prescriptions…ugh again! We did manage to get to the post office to resend for the 3rd time documents to SSDI…ugh why do they keep losing my paperwork. We drove back home to get the prescriptions…ugh. Went back to CVS and then headed to Eaton Rapids for lunch with Dawn at McDonalds…Gideon was so excited! Then a follow up with his Dr. He is still full of illness 😦 Double ear infection still, swollen glands, sinuses completely blocked up. So she prescribed prednisone to help all of the swelling (Is it bad that I want to keep the prednisone for myself 😛 and no I gave the steroid to Gideon. He is feeling better, but just the energy level! The rest of his little body still hurts.
Once we got home I passed out with a migraine on my left side (very unusual for me, most of my migraines are on the right side). Still have a mild migraine but a good day overall.
1/28/16 I HATE IMITREX! The side effects are so awful that I just don’t like to take it. My heart begins to race, my chest tightens, my throat constricts making it t difficult to breath. HOWEVER, it seems to be the drug that actually helps knock down the migraine that occurs over my right eye, the classic migraine that I fight often. I’m not sure how long the good effects last because I am starting to feel it creep back up, but it’s something. BUT DID I TELL YOU THAT I HATE IMITREX. Why does the medication that causes the most terrible side effects have to be the one that may help with the migraine. Ugh! But I am thankful that there are a few options out there now to treat the different types of migraines that I suffer from. Some people don’t even have that, so I shouldn’t be complaining. When I looked up my side effects though, it says to discontinue and to seek immediate medical help because the medication also has the side effect of heart problems that can be masked by the side effects I am having, so I would have no idea if I was in real trouble.
So in the mean time I will take Imitrex if I feel a classic migraine coming on. Prednisone will be reserved for long trips or very important events for the time being and Toradol and Robaxon work well to manage the tension migraines and New Daily persistent Headaches. I feel like I am gaining a little bit of control over this demon, but am a long ways from finding the medication that prevents the migraines/head pain/headaches from happening. One step at a time. I go back to MHNI next Tuesday to work on a new plan of attack. I have ideas and am learning so much about my migraines and patterns through writing this blog, that I feel like I am finally putting the pieces of a puzzle together. And though it is far from complete at least the outside edges are getting closer to being done.
All I know is that because of Imitrex I was able to pick up my son from school when he called saying that his thumb really hurt, run errands and take him to the Dr. in E. Lansing yesterday and this is all after waking with a migraine and not being sure if I would make it out of bed.
I am glad we were able to get in to Josiah’s Dr. yesterday though because the splint they put him in at the Emergency Room was really cutting off the circulation and causing a great deal of swelling even after we had already loosened it. They also determined that the fracture that the ER dr. saw wasn’t really a fracture. But because of the bruising and the areas the hand and thumb are sensitive, they said he likely sprained it pretty bad. We go back in 2 weeks to find out how he is feeling, but for now he loves his new Spiderman boot splint in his favorite color!! It is pretty cool if I might say so myself. He can take it off to take a bath, but for now he keeps it on all the time. When you just look at the splint it looks like any other, but it is actually hard and formed to his hand just like a cast, but this one can be removed. He was happy and the swelling went down rather quickly. So hopefully the pain will go down too 🙂
Chronic Classic Migraine
The International Headache Society defines chronic migraine as more than fifteen headache days per month over a three month period of which more than eight are migrainous, in the absence of medication over use. Episodic migraine is the other migraine sub-type, which is defined as less than 15 headache days per month.
These are the worst types of head pain that I have and are the most debilitating. They last 72 hours followed by a day of postdrome and can be immediately followed by another migraine. Sometimes I get 2-3 days between migraines (but those days are filled with NDPH, see below). My Migraine Cave was created for these, because I cannot get out of bed and the pain behind my right eye, in general, forces me to close that eye for most of those 72 hours. It makes it difficult to eat, drink, watch TV (so I tend to use my iPad because it has a much smaller screen and use an ear bud to make the sound more direct and in the ear opposite the migraine. It is the Migraine that doesn’t allow me to work, make plans, leave the house very often, which game me the title to this blog: My Family’s New Normal. We stay at home much more these days because even when I am feeling better, I am afraid the sound of restaraunts, movie theatres, anywhere with people really will trigger a migraine. But luckily my family are homebodies by nature and they don’t complain much about this.
- Affects both sides of your head
- Cause mild to moderate pain
- Cause pain that feels pressing or tightening, but not pulsating
- Aren’t aggravated by routine physical activity
Some people may have skull tenderness.
I am just coming out of a really bad Tension migraine. For me this tends to be brought on by both weather and any type of physical activity. The severity can range from moderate to debilitating and can often piggy back a classic migraine.
New daily persistent headache (NDPH)
These headaches come on suddenly, usually in people without a headache history. They become constant within three days of your first headache. They have at least two of the following characteristics:
- Usually affects both sides of your head
- Cause pain that feels like pressing or tightening, but not pulsating
- Cause mild to moderate pain
- Aren’t aggravated by routine physical activity
For me this headache started two days after the anaphylaxis and treatment that occurred on January 21st, 2015. This is the pain that I wake up every day with, and have done so since January 23rd. I have a baseline level of pain that is moderate or a 3 on a 0-5 pain scale (pain that I can function with). But sometimes the pain becomes more severe and widespread and turns into the Tension Migraine when the pressure becomes so severe that medication is needed to relieve the pressure or a trip to ER is needed.
Cervicalgia is neck pain that does not radiate outward to the upper extremities or shoulders. Its symptoms can be chronic or acute and can include neck stiffness, aching, tenderness, pain upon movement and headaches. It can be treated with application of ice when caused by an injury, heat when the pain is muscular in nature, temporary use of a cervical collar, anti-inflammatory medications and physical therapy.
I have gone to physical therapy for this and will start again soon. They help to work the stiffness out but I have to do the stretches at home to strengthen my neck muscles at the same time or the physical therapy only provides temporary relief.
5. Temporomandibular joint (TMJ)
TMJ acts like a sliding hinge, connecting your jawbone to your skull. TMJ disorders can cause pain in your jaw joint and in the muscles that control jaw movement.The exact cause of a person’s TMJ disorder is often difficult to determine. Your pain may be due to a combination of problems, such as arthritis or jaw injury. Some people who have jaw pain also tend to clench or grind their teeth, but many people habitually clench their teeth and never develop TMJ disorders.In most cases, the pain and discomfort associated with TMJ disorders can be alleviated with self-managed care or nonsurgical treatments.
I have a bite guard that I wear every night and also try and remember to do my jaw stretches (which uses my thumb and forefinger to stretch my mouth and is very painful…I can also get similar results eating an apple, which forces me to open my mouth wider which seems to get easier the further into the apple I get.
In a previous post I thought that the burst of energy might be a precursor to a migraine, because that seemed to have happened before the previous two migraines. But this time it wasn’t the case. which is good news for me really. I have had three days in a row with functional head pain and lots of energy. In fact I was up until 4:30am last night and awake at 7:30am…no nap!! This is a big deal. I am a bit tired, but my head won’t calm down…I feel like the energizer bunny, hence the Migraine Cave being created in the matter of 3 days.
Things that have changed in the past 3 days:
- The new glasses: Theraspecs Website. I have been wearing them at all times both inside and outside.
- I have stayed well hydrated (which was very helpful when I got a blood draw for allergy testing today).
- I have not spent all day in bed. I have been out and about, visiting with friends, shopping, etc. It has been a good 3 days.
I have also been watching the barometric pressure and feel spikes in my head pain when the pressure changes. But so far it hasn’t gone into a full blown migraine or a debilitating NDPH. There have been moments throughout all three days where the pain spikes for a half an hour or an hour here and there but I can almost always trace it to a drop in Barometric pressure.
A great article that my mom found about how Barometric can scientifically effect or trigger migraines.
Barometric Pressure in Relation to Migraines
My mom also found a great app for my phone that allows me to track 48 hours of Barometric pressure. It is called Pressur but you can do a search for Barometric pressure and it should come up. I paid the $1.98 to upgrade so that I do have the 48hrs. The free one comes with a 12 graph.
The day following a severe or even a mild migraine attack can be just as debilitating as the attack itself.
“The postdrome phase is the last phase of a migraine headache. It is usually preceded by the prodromal phase, the aura phase and the headache phase. The postdrome phase comes after the pain of a migraine has worn off. It leaves the individual with a feeling a little like a hangover.
People often don’t realize that the hangover is an official phase of a migraine, called the postdrome. Many migraine sufferers, especially women, do experience a postdrome after the headache, and it can last for around 24 hours.”
This is the period I am in now. The fog! And because I also suffer from NPDH, so I don’t get the full pain relief that others will feel. Just hoping that a migraine doesn’t decide to take hold again tomorrow. Sometimes that happens…back to back! These times are the hardest on my family and on me of course. But I can always hope that I get a day or two of “relief” at least from migraine pain.
After much deliberation, I decided to get a pair of glasses specifically designed for migraine sufferers. And I got them today 😀. I could have definitely used them over the passed 72 hours during one of the worst migraine I have had. Three days in bed will be fun to recover from.
But I digress. I got glasses for indoor and outdoor. I had to buy the ones for over prescription glasses so they are not cute and a bit bulky but I am hoping it will help with screen time specifically. But also to be in the living room with natural light as well. I look forward to trying both the indoor and outdoor glasses. I am also curious to see if wearing them during my baseline New Daily Persistent Headaches (NDPH) will reduce eye pain.
Today I accomplished something big for me. I went to several garage sales. It was so liberating. I got a bunch of clothes that will fit me right now. No exercise of any kind not even normal walking around does a number on ones body. And while it was wonderful getting out of the house, there is a downside; the daily persistent headache/migraine doesn’t tend to like all the commotion. So the second half of the day was bringing down the head pain. But it was so worth it. Most of you know how much I love to garage sale.
I got a really cool stool for a couple of bucks and a flip out matte that Gideon was already laying on that night 🙂
The daily persistent headache/migraine is still ever present. All day every day. It only becomes truly debilitating when I overdue something. I am able to use heated rice bags to give temporary relief when I need it. I also have a few meds that I can take to try and reduce the headache some because I cannot take any pain relievers. My vision has become more and more effected, the stuff far away is becoming more and more blurry. Hopefully with the headache gone someday the vision will restore. Just a few things from my dr apts yesterday. they decided some physical therapy on my neck might be helpful. The physical therapist also showed my how to stand from a sitting position to minimize my back pain. Also how to climb stairs. Simple things with amazing results. She also found two trigger point that made my headache instantly worse and then she sprayed a lidocaine spray on that reduced my headache to nothing for about 5 minutes. It actually kept it below my baseline every day headache for a few hours. It was awesome!! And I can get a prescription for it smile emoticon. I was given some good advice about entering back into large groups like church and bible study. I started to learn some biofeedback but the darn computer was acting up but at Least I was introduced to it. The PA I met with was pretty sure I had thrush but it’s hard to say because it isn’t getting any worse. I am going to give my new med for my headaches a few weeks to work. The next apt will be with the neurologist, physical therapist and psychologist (to learn more about biofeedback) in a month.
Michelle Govitz: My goodness Heather, I’m praying this pain is completely relieved for you! I can not imagine going through all that you have been. You do seem to have a very positive attitude which is great for you and shows others who are struggling with their own type of pain that one can face it with dignity and faith in God ♡
Heather Johnson:Thanks Michelle Govitz. Not every day is so positive. But I do love a good garage sale smile emoticon. But seriously my docs have my depression and anxiety under control otherwise I would never have been able to go to a sale or a restaurant or pretty much leave the house. It also helps that my parents Sherry and Bob Weaver have been so unbelievably supportive and have kept me from burrowing into my bed every day. Gideon cheerful nature and all those praying for me all together have kept my spirits mostly positive.
Michelle Govitz: I can imagine there are days that aren’t very positive! ! I have chronic depression so I know how hard those not so positive days can be you just always seem to slip some good news in with all this mess you’re dealing with. That’s fantastic! I see so many who just…sort of give up and become the illness. Keep fighting and we will keep praying.
Kathy Smith: My heart aches for you, Heather. Prayers continue.