Week and a day in review

I didn’t do it. I intended to do it. After I missed one day, I still thought I would do it, but didn’t write a single journal entry this past week. I’m such a slacker! I still kept up with my migraines on the Migraine Buddy app, so at least I have that information. Now let me share some of what’s been going on this past week.

On Saturday I had a vestibular migraine so debilitating that I could not walk without assistance. I stayed in a dim room (I really want black out curtains), in silence, with ice on my head all day. (The symptoms I was experiencing included vertigo and dizziness, light sensitivity, noise sensitivity, scent sensitivity, nausea, cognitive impairment, blurred vision, and numbness and drooping of the right side of my face. It was a cloudy icky day.  Finally around 8:30 that night it started to rain.  When the barometric pressure eased so did my migraine, just in time for bed.

On Sunday we went to have brunch with Stuart’s Dad and his wife at her home in memory care. It had been too long since we had been there for a visit, it was nice, but we sat in the little restaurant for way too long for my physical comfort level. By the time we left my back was hurting pretty bad, and I was starting to get pretty grumpy.  I had been feeling so much better since starting the new anti depressant, but Sunday I was touchy, sad, and down on myself. I knew I missed a dose on Friday, but dang. Then that night I realized I missed another dose, I was so angry and ashamed I couldn’t even look at Stuart. (overreacted?)  When I saw my psychiatrist on Tuesday I found out that the prescription she called in was for the wrong dosage, so for the last week I have been taking half the dose I was taking the week before. Oops. So no wonder it really messed me up when I missed a couple of doses!  I’m trying new strategies to remind myself to take my meds with breakfast!  So far so good!

Back to migraine talk. I mentioned in a previous post that I messaged my doctor and asked about a new rescue medication because the Maxalt isn’t working any more. I finally heard back from her, there was a problem with their patient portal, after it was fixed I heard from her right away and we’ve talked a couple of times since then, so I feel better about that. Here’s what’s going on there: She suggested one of two things, trying Zomig nasal spray (it is another triptan, but could help more in this form) or try Migranal nasal spray (it is DHE in nasal spray form). I’m trying the Zomig because my insurance will cover it (still cost a lot), my insurance will not cover the Migranal, however, if the Zomig does not work we will appeal to the insurance company to see if they will cover the Migranal. She is also trying to get another treatment approved, a Sphenopalatine Ganglion (SPG) Block. The SPG is a group of nerves linked to the trigeminal nerve, the main nerve involved in headache, and is located behind the nose. They use a catheter through the nose to apply lidocaine to the SPG. I’ve been reading about it, and I’m not sure exactly how my doctor is planning on using it with me.  From what I’ve read it has been shown to reduce chronic migraine frequency and pain severity over a 6 month period after having the procedure done twice a week for 6 weeks. So yeah, I’d like to try that.

The above was written last night, May 16th, I thought I’d finish this up this morning and post it, but today did not go as planned, following is a recap of today.

Today started out pretty dang good.  I decided to try to start the day completely silent to see if my migraines would hold off for longer.  It was a nice way to start the day, the silence kind of forces me to be more mindful. I ate breakfast outside, sat out by the pool, did my breathing exercises, and started to do more of my yoga exercises, but the sun was too bright. I was still feeling good so I decided to sweep the front porch and patio. Gaah! That was the biggest mistake of the week! I got about half of it done when the pain in my back started to get too much, I slowed down and tried to get to a good stopping point. Then my vision got wavy, the pain started in my head, and my back seized. Oh boy. I dropped everything where it was and got inside as quick as I could so I wouldn’t fall down outside. Things calmed down and I thought things were going to be fine, I just had to rest. After about an hour things were going good. I was ready to get up and maybe do something, then the vertigo started, and I was not going anywhere. The rest of the day has been filled with these on and off sensations of vertigo and pain.  I wanted to try the Zomig, but I’ve already taken medication 7 of the 10 days I’m allowed in a month, I decided to save it for days when I have to be out somewhere, or really want to do something fun.

Speaking of something fun, we are planning on going to the botanical gardens this weekend, it is supposed to be a very nice weekend for it.  Cross fingers and toes we can make it there, I really want to go to the Butterfly House, and it closes for the season soon.

the photo above is by the pool, it was taken this morning.  It is my favorite spot in the yard, especially this time of year with the yellow, red and purple blooms.

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This, That, and The Other

In just 8 days since I started writing these journal posts I’ve made some observations. The antidepressant is working, and I’m very glad I took the chance and tried it. I’m in a much better place mentally. On the other hand, I do not see a great improvement from the Emgality, I hope I’m wrong, but as of right now my migraines aren’t better and I’m having an increase in vestibular migraines. Finally, I can see that I get a lot more done than I thought I did, and by paying attention to what I’m doing encourages me to do even more. I may not continue to write these journal entries publicly, (let’s face it, who really wants to read my day to day activites?) but I think I will continue to keep a private journal, I can really see how useful it can be.

More thoughts about my migraines I’ve noticed over the past month or so I wake up with relatively no pain, this has changed since starting Emgality, I used to wake up with a migraine almost every day; however, within a couple of hours a migraine will normally start. There were a few days last month that this didn’t happen, but for the most part, I could set my watch to it. This past week I’ve had 3 vestibular migraines, (a vestibular migraine causes dizziness and vertigo with or without pain) each one has been accompanied with severe pain and confusion. These are not new, but they do seem to be coming more often, and are more intense. Things to talk about with my doctor.

Cactus Flowering Tucson, AZ W. Holcombe

Yesterday I finally spent some time outside. I have 3 types of exercises from my new therapist, breathing, hip stability, and functional. While I was outside I laid down by the pool and focused on my breathing exercises. It was so nice, I finally felt things said I should feel! Exciting! I got all of my exercises done, not all at once, but I got them all done. So, I didn’t get a whole heck of a lot done yesterday, but I accomplished exactly what I wanted to, I went outside, and I did my exercises. The rest of the day I didn’t feel well and didn’t feel like doing much of anything, then right before I fell asleep I had a migraine hit that was excruciating. I thought a cluster was starting it was so intense, but it didn’t quite hit that magnitude. However, the pain was behind my eye and in my temple, my eye watered and right nostril ran, just like when I have a cluster. I had to move because the pain was so intense. So, I’m not positive it was not a cluster, but if it was, it wasn’t quite as painful as ones I’ve had in the past; not to say this was not severely painful. (for me a cluster is the greatest pain I can imagine, the pain I had last night would have sent me to the ER if it had lasted longer, but it was not the worst pain imaginable.)

Quick rundown of today. I ate breakfast outside. I took a bath and washed my hair. (this is a big task for me) I had a dentist appointment (check up, cleaning, fixed a small chip in a filling, and a fluoride treatment), went to Trader Joe’s, had dinner at the table with my husband, made “brownies” (hopefully I’ll sleep better tonight), and watched old Dr. Who’s for a bit. I did have a migraine that started shortly after breakfast but it didn’t get above a 6 all day so I was able to function. I used my functional exercises while making brownies and my back hurt less, but it did start to hurt more after I finished. I’m just thrilled I was able to get them all mixed up and in the pan without being in intense pain. Today was a FULL DAY! Tomorrow is an early day, so I’m going to bed.

Short day

The day started out okay. I could have slept longer but Kiki decided it was time to play, and who can argue with that face?

Kiki

It was a normal morning, I had my breakfast, took my meds and thought about what I could accomplish today. I only had 3 things I wanted to get done 1- spend some time outside, 2- fill out insurance information for cochlear implant replacement, 3- do my new exercises.

Out of the 3 the exercises were the most important, so I decided to do that first. Then I looked down at the floor and thought, “There is no way I’m getting on that dirty carpet and have my allergies go crazy again, I’ll vacuum it first.” So, I picked up everything on the floor, moved things around, pulled out the vacuum and vacuumed our small living room. It was going well, then right before I finished I had a shooting pain through my head, the room spun and got dark, I had a hot flush, got nauseous, and had to sit down fast. Another vestibular migraine.

The pain lessened in intensity in a relatively short period of time, but I’ve had continuous other symptoms throughout the day. I feel awful and can’t trust my balance at all, so I basically spent the day curled up in my chair watching Netflix (I saw a talk by Brene’ Brown and an episode of Queer Eye) then I watched cooking shows (which made me want to bake bread and make my own crackers.) Have I mentioned I’m obsessed with The Great British Bake Off? I watch it over and over, can’t wait for a new season to come to the US. Oh, it’s called The Great British Baking Show in the US if anyone is interested.

Now I’m off to bed, having only accomplished, let’s see, nothing on my list for today; and that’s perfectly okay. I got the living room vacuumed!

I do believe the new antidepressant must be working, 2 weeks ago having a day like today would have made me feel worthless, useless, and filled with dread. Today I can take it for what it is, life at this moment. Nothing more, nothing less. I guess it was a good day after all.

Weekend Warrior

One of the last of the wildflowers 2019 Tucson – W Holcombe

I missed writing yesterday, it was such a full day I just didn’t get it in.

Before my painting class with my niece I decided to take a Maxalt, and a couple of toradol with a little caffeine to see if I could get this migraine to a level where I could not only be present for the day, but also enjoy it a little. The pain did get to a more tolerable level, and after an hour I took the 2nd dose of Maxalt (if the pain doesn’t subside with a first dose you are supposed to take a second, I normally don’t because I don’t want to run out of my medication too soon, but on special days I will), after the second dose the pain was reduced more! Yay. The class was fun. I was sad because I cannot understand most of what my niece says, she speaks very quietly most of the time and does not move her mouth much at all. I’d love to be the aunt she could whisper too and tell secrets, but I can’t hear most of what she says. It makes me so sad. It did bother me that I did not get a thank you at the end of the day, I wasn’t surprised, that saddens me too. I do think she had a good time, though.

After our painting class we went out for pizza with the family. It’s always a mixture of emotions when I spend time with Stuart’s family. I like the feeling of family, but it can be a bit too much for me all at one time, and Stuart’s sister is very boisterous. I can only take her in small doses. We had to go back over to their house for some things after lunch so my time with her was close to hitting it’s limit before we left, and I was starting to have more pain.

When we left I was still feeling pretty good though and decided I did not want to waste it. I knew I might be pushing it a bit too much, but it’s a good chance that the next day could bring increased pain no matter what I do, so when I’m able, I’m taking advantage of it. I found out about this little clothing store that carries a style of clothing that I like so we went to check it out. Funny thing, I got 2 dresses, and neither one of them are in the style that I went there looking for. ha!

After that we were both bushed, but we wanted a treat so we got frozen yogurt before we went home and spent the evening watching baking shows and old Dr. Who’s.

Today I woke up feeling pretty good. Ate breakfast, picked up a few things around the house, then set out in the backyard to poopy scoop, something I haven’t done in a very long time and I’ve been feeling very guilty about it. I walked out and saw that the little rake and pan that I use to do it had been moved. “Oh no, my landlord felt the need to pick up my dog’s poop!” I felt so ashamed. I told Stuart and he said he wouldn’t feel bad if someone did that he’d just thank them. Ugh! I thought well no wonder stuff just accumulates on the porch and things are not put away….he feels no shame about things. Our back porch looks awful, he should be ashamed. So I told him so! Then I went out there and cleaned up the back porch! I moved and rearranged plastic totes (they are empty), I swept down the cob webs, I swept off all the totes and pool floats, I swept the porch (boy was there a lot of little mesquite leaves on there!), I wiped down the grill, and I got Stuart to get rid of the 2 cardboard boxed that were back there. Now my back porch looks all clean and organized, and we look like we take pride in our home. I am absolutely amazed at how much I can do when I’m mad! The amazing thing is, I could sweep like that and it didn’t hurt my back much at all, but have me stand at the kitchen counter and try to bake or cut up veggies and it hurts so bad it brings me to my knees.
(Yes, I know the whole thing about feeling shame sounded snarky, I felt snarky at the time. I shouldn’t have gotten mad. I know a lot of my anger actually came from feeling that I can’t do my share to help keep up the house and the yard. Stuart and I talked about it, and he says he understands, I think he does, and I still think he needs to feel a little shame now and then. lol)

After all that adrenaline flew out of my body I fell into a heap in my chair and crashed. Then after about an hour I started seeing the world vibrating and going dim, I suddenly felt high but I hadn’t done anything to cause it, then the pain hit; a vestibular migraine had started. It wasn’t quite lunch time when I curled up ready for the end of the day.

I had a very full weekend, I got a lot of things done and had some fun, now for some sleep.

Journal Day 2 – Yoga Therapy

It has been a very long day and I thought about not writing today, but the main reason I decided to post these journal entries here instead of writing them in a personal journal was to keep me accountable and keep me motivated, so here goes it.

Firs Saguaro bloom I saw this year.

My 3 day migraine broke about 10pm last night, so I was able to sleep well until 5am when I woke feeling a bit off and went to the bathroom when suddenly vertigo hit and so did the pain in my head. I had a vestibular migraine, with migraine associated vertigo. I’m not sure how long the vertigo lasted. I took my medication, and used medical marijuana to stop the vomiting and waited it out until I could go back to sleep. Stuart stayed with me and then worked from home to make sure I was okay. When I got up at 10am I no longer felt the effects of the vertigo, but the migraine was more intense. I ate breakfast hoping it would improve before my 1pm appointment, but by noon I decided I needed to take something. It took the edge off just enough that I was able to get through my appointment.

Now, about that appointment! I’ve been in physical therapy for my back and it simply hasn’t been helping so I decided to try something else. Someone recommended a woman who is a physical therapist who teaches therapeutic yoga. I’m working one on one with her. The first visit was very interesting. She showed me lots of photos of how muscles work together and we talked about how if certain muscles in one part of the body are not strong then other parts of the body will suffer. My hips and pelvic area are weak. She said that often when those muscles are weak it will cause pain in the back, especially when standing for a while, like mine does. She gave me some very simple exercises to focus on over the next couple of weeks then I go back in. I don’t know if this will help my back or not, but I know my whole pelvic area needs to be stronger so I’m going to work really hard on this. I’m really proud of myself for going to this appointment after waking with vertigo this morning, often that would cause me to be too afraid to do anything for the rest of the day. I was more off balance than normal, but I was determined, and since Stuart was able to take me I felt safe.

After that appointment we went and picked up my new glasses. I got new glasses a couple of weeks ago, but they made the lenses wrong. They had the focal point in the wrong spot so my progressives were not working at all. Now they are all fixed and I can see the computer. I’m not positive I like these new frames, it will take me a while to get used to them. They are SO different from my old ones. I went from dark bold statement frames to clear light weight frames. What a difference. I would post a picture, but I’m in bed. lol

We then went to Walgreens to pick up some prescriptions of mine and get some things straight they have messed up and I had a bit of a melt down. They really have messed up a few of my prescriptions, calling doctors for refills who I don’t see anymore, filling things I don’t need, prescriptions not showing up on line so I can manage them….So I had a list of things that needed to be discussed fixed, but I couldn’t hear anything in there so Stuart had to do the talking. I was trying so hard to follow what was being said, and he would ask me something and I’d try to answer and then I felt like he just dismissed me and half the things on my list were not addressed and it was just a mess. I ended up in tears and went to sit in the car. There has to be a better way for me to communicate the things I need.

I looked back at the situation and when we walked up there it was so noisy I got so overwhelmed told Stuart that I couldn’t hear so he would need to handle it for me. Right there, I gave up my control in the situation, but then I got upset when I felt like he “dismissed” me. When I started to feel like things were not being handled the way I wanted them to be, I should have spoken up and said something. Even though I couldn’t hear well enough, I should have made them slow down and help me understand, even it that meant they had to write it down. This is my healthcare, I need to be more assertive and stop being so afraid.

There’s something else I need to also look at with this situation though, I had a migraine. The pain had increased to a 7, it was harder to concentrate and focus, my vision was slightly blurred from the florescent lights and the right side of my face was tingling. I honestly don’t know if I would have spoken up if I had been migraine free, but I do think I need understand that migraine changes how you deal with life, and I need to give myself a break sometimes.

Unsteadily Unstable

For the past month or so I’ve been filled with an inner rage and desperation that has been screaming for help.  I was hearing all the anger, fear, and sadness, but I couldn’t hear the call for help.  This week I finally heard it.  I finally understand that I haven’t been just reacting poorly to the stress in my life, or having mood swings because of a hormones, no, I’ve been having a bipolar episode.  I still know my moods aren’t where they should be, but it’s better than it was, and I will be seeing my doctor about it very soon.

I have so many things I want to say, I don’t know where to start.  hmmmm.

I have been reading about bipolar symptoms, specifically rage, and saw many things that are too familiar.  The rage can be set off by the smallest of things, often something I would never even consider getting mad about on a normal day.  The anger starts and builds quickly to a full blown rage!  After all the screaming and throwing things, and who knows what else, is over I feel better for about 2 minutes then I suddenly think, “Oh my god, What have I just done?”  Bipolar rage if often associated with mania,  but can also manifest during depression.  For me if the rage is from a manic episode I blow up fast and furious, but it burns out as quick as it started, leaving only the guilt and hurt behind.  When the rage comes during a depression episode I will have a huge blow up and it will go down, but he anger is still there, and I will blow up again, or I just stay angry for a long time.  The rage inside wanting to break through the surface.  So rage during mania is like a short burst, the rage during depression is a short burst followed by underlying anger and possibly another burst or two.  Both can cause everlasting damage, but the later is much harder for me to deal with.  When the anger doesn’t just go away after a rage episode I start to think it’s not caused by my mood disorder I’m just a bitch, and I start getting angry at myself.  So much anger, that is so hard for me.  I’m not normally an angry person.

Sometimes I will get angry about something, but I don’t let it get to me, just slough it off – at least I thought I did.  Often when the rage hits it’s after I’ve had a few things happen that have caused me to get mad, but I didn’t feel like it was a big deal, I thought I was just letting it go.  It seems to me that it will often be a little thing that sets it off, but it’s like the last straw kind of thing, all those little things I have gotten mad about suddenly rise to the surface and that one little event that made me blow up was fueled by all those other small flames.

Rage can damage even the closest relationships.  It can cause trouble at work, with your family, friends, authorities….rage can really mess up your life.  I’m so very lucky that my husband understands that my rage may seem focused on him, but it really has nothing to do with him.  Sometimes it does spark conversations and we fix all those little things that built up, but honestly the rage is never deserved. Even though he knows all this, it is still very, very hard on him.  When I get to the breaking point I often leave.  I will pack a bag and set off.  I have no idea where I’m going, and I just get madder because I feel I have no where to go.  When I leave like that it hurts and scares Stuart so much.  During this last episode I made him cry.  My husband does not cry often.

I was mostly stable for over 20 years, but over the last few years I’ve had more than one break through episode.  I’ve needed to change medications too many times.  I’m afraid we are going to get to the point where nothing works.  In addition to Bipolar I disorder, I also have generalized anxiety disorder.  Trying to find medications that treat both and I can tolerate has been a challenge.  I’m hoping the gene test I did will help with that.  I can  definitely say, that the new medication she put me on is not working, we have to find something else.

For over a month now I’ve been dealing with severe anger mixed with depression and anxiety.  I have also been getting tickled over the stupidest stuff and laugh until it hurts, but that doesn’t last long and I return to the negative moods quickly.

I think the rage has also been triggered by the return of my vertigo.  I’m back to having attacks multiple times a day.  I do think many of them are caused by migraine instead of Meniere’s because with some attacks I’ve been having aura right before it starts.  The fear has been real.  Not just the fear that it is coming back, I’m actually starting to accept that I am having a relapse, but I know the is a possibility for a remission.  However, I fear for my safety.  I’ve fallen 3 times in the past 2 weeks.  I’m back to using my walker in the house and sometimes when we go out.  (often when we go out I can use a shopping cart, or Stuart’s arm to steady me enough that I can get by for a bit)  For the most part I’ve been confined to the house, without the ability to do much of anything except watch TV.  I did sit outside once this week, but I had vertigo outside without anyone home, I had a very difficult time getting back inside.  I don’t think I’ll be going outside when I’m home alone any time soon.  I did ask my landlord yesterday if he would be a backup for me if I fell and needed someone and Stuart couldn’t get home, gratefully he said he would.  Of course, he also might not be available, but I’m relieved to know there is someone can call if I need it.

I think that’s enough for today.

I’ll leave you with a few photos I took yesterday of the flowers around my yard.  I miss seeing the leaves change colors, but I’m seeing a different beauty in the desert.  (most of these are Lantanas, technically a weed from Mexico.  It is very pretty and drought resistant. You will find them all over the area.  I’m thrilled to see this gorgeous native plant almost everywhere I go)

 

It’s challenging

I have no idea where to start this post.

I guess I’ll start first by apologizing for having to have Lorraine do Mindfulness Monday for me again this week (thank you Lorraine, you awesome) I have been feeling like a fraud.  I have been talking about mindfulness for a few years now and I simply haven’t been able to live the life.  My life seems out of control right now and I haven’t been able to accept that this is the way it will be and be okay with it.  My meditation practice has never been as regular as I’d like, but lately it has been non existent.  Why is it when I need this the most, I have been unable to simply let that shit go.

Living  in close proximity to family has been more stressful than I thought it would be.  We haven’t been able to help my father-in-law as much as we thought we would.  He simply wants to keep doing as much as he can in addition to caring for his wife, so he has some semblance of normalcy.  We do try to see him at least once a week, but that doesn’t seem like enough to me, and we haven’t been seeing as much of M as I thought we would.  She has no idea who we are and I’m afraid that is making her a little frustrated.  I’m not sure about that though.  She is very pleasant to be with, she talks and talks, I just wish I could hear her better.  Now that I’ve been more symptomatic, it’s hard to do much to help anyway.

My hearing loss has been much more of a challenge here than I thought it would be.  Not only do I have trouble hearing M, I can barely understand anything my niece and nephew say, and my new psychiatrist…well, let’s just say, I won’t be going there without Stuart with me to help translate.  She is very soft spoken and has an accent so she enunciates her words differently, it makes it extremely hard to read her lips.  I wish I knew sign language so I could request an interpreter.  I could request CART, but that’s really hard to set up, so it could make it very hard for me to get an appointment when needed.  I also don’t understand my headache doctor, he also has an accent, he talks fast, and really has no idea how to talk with someone who has profound hearing loss.  That kind of amazes me.  This city has a large elderly population, that means there are more people here who have late onset hearing loss, doctors should know how to communicate with us.  Oh who am I kidding, many doctors don’t know how to communicate with anyone, hearing or not.

The vertigo has gotten worse.  Ironic thing, I just received a letter saying my Medicare benefits are being reviewed, right after that my vertigo started going crazy!  When I finally got Medicare my symptoms started getting better, not immediately, gradually, but it was better.  Was it the extreme stress of feeling like a burden, and the fear that if something happened to Stuart I wouldn’t have insurance or any income, causing my vertigo to be worse?  I have no idea, all I know is that I’m having vertigo again, often, and I’m really upset about it.  I’m even using my walker again, not every day, but I’m definitely getting use out of it again.  I think buying a car was tempting fate, the last time I got a car I got worse….you can see how my mind is just spiraling.  I’m so tired.

To top it all off, I’ve been dealing with some of the worst rage episodes I’ve had in a long time.  I started taking estrogen about 2 weeks ago for menopausal symptoms, I’m thinking that could be it, but since I have Bipolar Disorder it always concerns me.  I do have a call into the doctor, let’s hope we can figure this out before I kill someone.

Speaking of my mental health, my psychiatrist had gene testing done to help determine which drugs are best for me.  The results are very interesting.  I want to share a lot of that with you, but this post is getting long, so I’ll save that for another day.  If you’d like to read more about the test I had, it’s called Genesight, here’s the link to their site.   https://genesight.com/

My back has started seizing again, the muscle spasms stop me from doing a lot of the things I’d like to.  Like baking!

But I was able to do a little celebrating for Halloween (after a complete meltdown on Halloween day, the night turned out pretty good.)

Here’s a few photos of my makeup, one from a festival we went to on Friday and the other for Halloween night to give out treats.  Halloween night wasn’t very inventive, it was the end of a very long and emotional day, so my makeup was not what I had planned.

 

I hope your Halloween was a hauntingly good time.

I’ve been having a hard time writing lately, I may be writing more journal type post, I think I need to get more of this stuff out.

 

 

And The World Spins Madly On

Early yesterday the barometric pressure took a nosedive and my head went with it.   My head started to throb and the light was excruciating; I took meds and carried on…or I tried to.  I realized I wasn’t up to grocery shopping or cooking to I looked in the pantry and threw a few things in the slow cooker for soup.  Then it was a sit in the chair and knit kind of day, and I was okay with that.

After Stuart got home we had soup…I’m so thrilled with how well that soup turned out, btw.   I left the room to go to the bathroom and I felt it hit….the bottom dropped out of my stomach, I got all hot, and my view began to spin….vertigo.  I leaned, for support, with my forehead and palms resting flat on the wall before me, knowing if I moved I would fall down, I called out for Stuart.   He came and helped me to the bathroom and back to my chair.  The worst had not arrived…

As we got ready for bed I took my nightly meds and started to settle down when I started to feel bad, really bad.  I mentioned to Stuart that my meds were kicking in really fast and I was feeling loopy.  (this does not happen, normally I take my meds and I start feeling sleepy, I read some and then go to sleep, I never feel “loopy” from my night meds)  I decided to just lie still and try to sleep, then I suddenly got hot all over and my stomach wanted to rebel! I laid very still trying hard not to move my head, but it didn’t work, the room began to spin and I felt like I was moving….vertigo…again…damnit!

I tried so hard not to disturb Stuart.  He has to get up really early to go to work and I hate when I have to disrupt his sleep.  He stirred a few times and I admitted I was sick but told him to go back to sleep.  I knew I could handle it, at least I told myself that.  I did sleep some, on and off, all the while feeling like I was moving.  Every slight movement of my head caused the room to spin faster, and my stomach to lurch.  I was not doing well, but I was dealing with it.  I survived the night, and I didn’t vomit, that is a miracle.

Today, I still have this feeling of motion and if I turn my head quickly the room spins, but for the most part it settled down.  Now it’s all the other symptoms that go with vertigo that are still getting to me.  The gastro-intestinal upset, the extreme fatigue, the anxiety, and, of course, my balance is completely compromised.  It’s been a challenging day.

As I sit here writing this I’m reflecting on this illness of mine and how it has manifested itself over the years.  It came on sporadically, having severe vertigo attacks once or twice a year without any other major symptoms, then it turned into me having vertigo multiple times a day, sometimes minor, sometimes very severe, I was basically bed bound for almost 3 years.  Then less than 2 years ago I started having less and less vertigo and the attacks I had were not nearly as severe as they used to be, I have been so much better that I started to drive again.  I even bought a car a couple of weeks ago.  Now, I’m being reminded that this will always be with me.  I will never escape Meniere’s disease, and I’m scared.

The fear escalated through the night and all day today.  My thoughts keep running to the “what if”s.  What if this is a new stage and it’s worse?  What if I can’t drive and I just bought a car?  What if I need more help than is available now?  What if?????

Can you see me spiraling out of control?

Time for a reality break.  Yes, I have Meniere’s and I always will.  Yes, it is unpredictable.  Yes, it could get worse, or it could get better.  Nothing is certain.  Life is not as I expected, so I will change those expectations, or better yet, I won’t have any.  Now, it’s time for a deep breath and a good night’s sleep.  Tomorrow is a different day.

Mini Update … I tried

I know you can normally find Mindfulness Monday here each week, I tried, but I haven’t been able to write much and I thought I’d explain why.  (it has taken me many days to write this post, so bare with me…mmmkay?)

You may recall that I had De Quervain’s tenosynovitis in my left wrist/thumb earlier this year (you can read about it here), but you may have missed that I now have it in my right wrist.  The left wrist was treated with a cortisone shot and since then I’ve had no problem.  I’ve had 2 cortisone injections in my right wrist and I’m still in pain.  (you can see pictures from the first injection here)  I had the second shot on my birthday (July 2nd) my wrist felt better the first day after the injection, but by the second day I was back to the original symptoms and by the 3rd day it was actually worse.   When I went in for the second injection he gave me the option of having surgery or trying the injection again, he told me that if it didn’t work to just call and schedule the surgery I didn’t even need to come in again.  So I chose to try the injection again, to say those injections are not pleasant is a huge understatement, but I was really hoping to avoid surgery.  After a week, when it was evident that the shot didn’t work, we called to set up the surgery and were told that it was too soon after the injection, I have to wait 4-6 weeks.  I was not a happy person.  I have a lot of limitations because of this issues; I can’t write or draw, I have extreme difficulty brushing my hair, typing, cooking, picking things up with my right hand, swimming…I’ve wearing a brace that holds my wrist and thumb stable, if I don’t wear the brace, I can’t do much at all…unfortunately the brace has started to cause issues on it’s own, 20180717_113113

so I have to stop wearing it.  The good news is that the surgery is almost always successful, and it’s very minimally invasive, in fact they often do it with local anesthesia.  (I will admit I’m a bit intimidated by that, I don’t want to see them cut on my arm…ewww, but I also hate going under general anesthesia, so we’ll see)   I was having a hard time accepting that fact that they were making me wait for the surgery, honestly I was pretty pissed; then I remembered that the way to happiness is acceptance.  I decided to look at the whole situation differently.  It’s only a few weeks difference, they aren’t saying I have to be stuck like this forever.  I stated taking extra supplements that are supposed to help with joint and inflammation issues, hopefully this will reduce the swelling and some pain.  (if you’re interested I’m taking extra turmeric, collagen, glucosamine..I think that’s all)  Even though I’ll still need surgery, if the swelling is down, it should help with recovery.  Accepting this situation made life a bit happier.

On another note, I’m having increased migraines, often with migraine associated vertigo, and cluster headaches.  When we first got here my head actually felt better, but that didn’t last long.  Bright lights are a big trigger for me and it’s really bright here, more than that, now it’s monsoon season so the barometric pressure has been all over the place with crazy storms almost every day, my head is definitely feeling it. 20180716_172608

I’m also having a lot more cluster headaches and I don’t have anything to help them.  I saw a new headache specialist about 3 weeks ago, I wrote about it here.  I felt optimistic after that visit, but I haven’t received the gammaCore that he prescribed, it was supposed to arrive in about 5 days.  We called to find out the status and no one called back, so we called again, and still no call back.  I know that the office was moving but that doesn’t excuse them from paying attention  to their patients.  **Update**  They called late yesterday and it seems that the doctor didn’t have us fill out a form that he should have, so it delayed everything.  The nurse who called said she’s fill it all out and we could sign it the next time we are there, so the gammaCore is now on it’s way!  I should receive it by the end of the week!  Thank goodness.  (the gammaCore treats both cluster headaches and migraines!  again, Thank Goodness!!

So that’s what’s been keeping me away….along with other stress, but that’s for a different day when I can actually type without being in intense pain.  Hunting and pecking with my left hand is not fun.  🙂

“Accept – then act.

Whatever the present moment contains,

Accept it as if you had chosen it.

Always work with it,

Not against it….

This will miraculously transform your whole life.”

~ Eckhart Tolle

 

Migraine Awareness Month, my migraine update

migraine awareness
I don’t know who to credit for this image, but it is so true I had to use it. If you know who I should credit, please let me know.

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.

gammacore
image courtesy of http://www.gammacore.com

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)

migraine-treatment
image credit https://www.marijuanadoctors.com/conditions/chronic-migraine/

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.

As I navigate this new world of treatment, I will post more about it and give you lots of updates.  To learn more about how medical marijuana can help with migraines there’s a great article here: https://www.marijuanadoctors.com/conditions/chronic-migraine/

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?

I’d really like to know your experiences.