mini update…it’s all about me

20180902_140241It’s Labor Day, for most it’s a time to a honor the workers of America, and send the summer off with a bang.  For me, Labor Day this year marks my 14th wedding anniversary.  I can honestly say, I’d marry this may again in a minute!  It sure doesn’t feel like our wedding was 14 years ago, yet, it feels like we’ve known each other forever.

We had planned to go on a day trip to just get away, but things haven’t quite turned out as we’d planned; maybe we’ll make it there soon.  Instead we went to the botanical gardens here in town, it was like walking into a secret garden, I really needed to get out and commune with nature.  I’m so glad we Stuart talked me into going.

(I’m actually starting to get sleepy, but I really wanted to post this now, so I haven’t read over this, please excuse any and all errors, if something doesn’t make sense, let me know.)

sleep: After reading the comments left of my post about my lack of sleep and extreme fatigue, I have tried a few things and I think I may have discovered a couple of things that may have been contributing to it.

  • One – allergies.  It was suggested that this might be the case so I checked looked up what might be causing that, and found out that ragweed is causing MODERATE pollen counts.  I’m very allergic to ragweed, so I increased my antihistamines and have been doing a saline spray.  I wish I could use a Neti Pot but it causes vertigo.
  • Two – mood swings.  Someone mentioned that when she is feeling the way I have been that she knows she is a bit manic.  Well that sent up bells and whistles.  I realized just how quick to anger I have been lately.  I’ve been cutting myself off from people.  I am trying to make an effort, but it has just been so hard.  I’m simply having a hard time putting forth the effort.  I’m sorry I’ve been neglecting my people.  I’m also having uncontrollable crying spells.  Today (I’m wring this on Sunday night) I just couldn’t stop my eyes from leaking.  It annoyed the hell out of me.  So, have I been a bit hypomanic, that would cause the anger and the lack of sleep, but it doesn’t explain the tears.  Could I been depressed?  Is it possible to be experiencing both at the same time?  After being diagnosed with bipolar I over 22 years ago, you’d think I could figure this out, but I must admit my moods have not been as stable this past year as they have been for many, many years.  I’m not having full blown mania or severe depression, but I’m having a very hard time coping.  I’m also having a very hard time holding my tongue, and unfortunately I have been hiding how I’ve been feeling from almost everyone (I do share these things with Stuart, we are in this together) including someone who is causing me some severe anxiety.  I’d really like to cut this person out of my life, but it’s just not possible, at least not right now.  I’m trying hard to just let it go, and be gentle with myself.  I understand that I’m really getting upset because this person is not behaving as I expect people to, it is these expectations that I have to let go of.  But the drama is affecting other people in my life and that is causing me more anxiety.  I’m sure most of that makes no sense, but it felt good to get it out, even if it is a little cryptic.
  • Gabapentin – I’ve been taking 100 mg of gabapentin 3 times a day for a while now, and it hasn’t really bothered me.  I take 200 mg at bed time and 100 mg upon waking.  If I don’t take this my arm goes to sleep and aches, my back hurts more and my aches and pains are more intense.  Since moving here I’ve needed to refill my prescription a couple of time and I noticed that the manufacturer is differnt than the one who supplied my pharmacy in NC.  I can’t help but wonder if that changed things.  so for the past couple of days I haven’t been taking my morning dose and honestly I haven’t been nearly as sleepy during the day. That’s unfortunate because my pain has increased quite a bit.
  • Stress and anxiety.  We’ve talked about this before, but I have spent a number of hours awake lately when I simply could not shut my brain off.

What I discovered was not an issue.  My use of medical marijuana.  For the most part I’ve been using mostly CBD during the day. You can read recent studies on sleep and CBD on NCBI  To make sure the CBD was not causing my insomnia and/or my daytime fatigue I decided to stop taking it for a while.  After 2 weeks I saw no difference with my sleep, but did notice an increase in my headaches and anxiety.  I haven’t been using any cannabis with THC duing the daytime.  I have still been taking it right before I go to bed, it does help me sleep for about 4 hours at least.  (note I’ve been using marijuana to help me sleep for a couple of years now)

Increase in physical symptoms: I’ve been much better for a while now…my vertigo has been almost non-existent at least 9 months now.  This past week, it has been worse again.  I haven’t been having full rotational spins for the most part, but I have been seeing things move and I feel like I’m moving.  I’ve had a few spells this week that caused Stuart to come home early to help me.  I haven’t thrown up from vertigo in quite some time.  Even before I stopped having vertigo on a regular basis, I had stopped vomiting.  I normally use a little cannabis to stop the nausea and vomiting, but I was trying hard this week to not do that, I wanted to make sure it wasn’t causing me to lose sleep.  Well, it wasn’t and I will be using it to help with the vomiting the next time I have vertigo.  My migraines have also increased, and I don’t feel like the gammaCore is doing much.  That makes me sad.  To be completely honest, I’m having a very hard time staying in the present and not freaking out over the thought that I might get back like I was.  I’m already afraid to drive again.  Shoot.

House search: We still haven’t come close to finding a house that is suitable, there just aren’t very many houses that have the features we want/need.  Now we’ve found a little snafu on our credit report that we need to clear up.  It’s sad when someone has a credit score of over 800 and the ability to put down a down payment of over 20%, and we are having trouble getting pre-approved.  There’s something wrong with that picture.  We are hoping we can get it straight soon.  If not we’ll just rent for a while. I’m trying hard not to stress over it.

Eating:  I still feel like food is controlling my life.  I recently had a week where I wasn’t starving all the time and I was able to stay in my calorie range.  I’m terrified of gaining all that weight back, yet I can’t seem to stop eating, and that is simply tearing me up inside.  I did find a cool app called Mealime and it has been a great help in planning meals that are pretty easy and healthy too.  Now if I could just control the snaking, especially in the middle of the night.  How did I go from having to force myself to eat, to overeating?

Doctors: It has been a challenge finding doctors here.  Most of the doctors I found on the BCBS site who said they were accepting new patients actually weren’t.  I do like the PCP that I found, except for a couple of things, I’m hoping those things will resolve themselves after we get to know each other better.  (like she isn’t comfortable prescribing my Valium for the vertigo.  I don’t take if often, but if I’m having vertigo that is the only thing that helps calm it down.  I do not take it as an anxiety medication, nor do I over use it.  My last prescription of 90 pills lasted me almost a year!  She doesn’t seem to understand that it is the best vestibular suppressant out there.  I will have to find an ENT.  I want to see a neurotolgist here in town, but he only sees patients that have been refereed by an ENT.  So I have to find one of them first.  Argh, what a pain!  I am hoping he can treat both my Meniere’s an my migraines though, so I really hope I can get in there to at least talk to him and see if he can offer any help at all.  I do like my neurologist now, well what I learned in my first visit to see him anyway, but I do not like how hard he is to get in touch with, nor do I feel like his staff is very helpful.  Recently I had a seizure, my first in a very long time, the next day he called my neuro and left a message about it.  No one ever called back.  I had a seizure and NO ONE CALLED BACK?!?   The doctor who operated on my wrist was not as thorough as I felt he should have been.  Every time he was in the exam room with me I felt he was always on his way out the door.  I didn’t feel like he answered all my questions and I didn’t feel like I had clear enough discharge instructions.  He also didn’t even talk with Stuart after my surgery.  Talking to me right after I wake up is not a good time to expect me to retain information.  They did send me a survey to fill out and I spoke up about my feelings, I’m proud of myself for that. I was told by the resident who took my stitches out that I could have pain from the healing for a year. wow!  Didn’t expect that one.

That’s all for now….I guess that was a bit longer than a “mini update”  perhaps I should have called it a “maxi update”  🙂

*photo taken by W. Holcombe at Tucson Botanical Gardens, Tucson, AZ – all rights reserved.  Please do not copy without permission.

 

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What is wrong with me??

image by w. holcombe

image by w. holcombe

What is wrong with me?   This is the question I kept asking over the past couple of weeks.  Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart.  But I don’t think that way….or I try not to.  I accept things as they come.  I just roll with the punches.  Yeah.  Well that isn’t how it has been going.  I’ve been trying.  But I’m not succeeding right now.

It has just been too much.  This post is about the latest….

I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!

It started the beginning of this month.  I would just suddenly have this whoosh feeling and I’d start to spin.  It just felt different.  I can’t explain it.  Maybe it was different because I had been feeling so off for so long.  I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving.  Maybe?  Really, who knows.  But these attacks…they are different.  The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.

One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time.  We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo.  If I had been standing, I would have hit the floor hard!  It scared me so much.  Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over.  It scares me just thinking about it.

When it started I had just had a day completely vertigo free.  I could focus on a spot without it moving, the boat stopped.  Relief.

What happened for that day?  What happened after that day?  These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard.  I’m an inquisitive person.  I’ve always been that way, I want to know how things work, I loved science and proving theories.  Telling me that no one knows something about a scientific problem is hard for me.  I keep thinking I’ve accepted that.  And I have.  I have.  But I don’t want to.  I want it to change.  I want to know what is happening to me.  What changed?  And more than that, I want for people to stop asking me that question.  It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone.  I want to just scream….I DON’T KNOW!  Please NEVER say to a chronically ill person, “Why can’t they do anything?”  of  “I think you need to find a new doctor.”   You have no idea how many doctors I have been to and still continue to consider.  However, this is my life.  It is my decision how I get treated.  You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do.   (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so.  That’s different, we are going through the same crap…excuse my colorful language.)  However, normal people do not understand.  Heck, some people who have this don’t understand, it’s different for different people.

So….off that soap box and pity party….

I went to the doctor on Wednesday.  Yes the doctor here in Charlotte.  He really doesn’t listen.  I will not go back to see him.  I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor.   (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.)    They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s.  I will be doing some research, but if he is the head guy…I am up a creek.  Let me tell you about my latest visit.

I did get an appointment rather quickly, that was nice.  We got to the office and I had to be taken in by wheelchair.  They thought I was in a wheelchair because I had back surgery??  I never said I was having back surgery.  I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?)    He asked me about these attacks, how long they have been happening and what they were like.  I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning.  He asked me to describe the attacks.  I looked at him and said.  “You know what a Meniere’s attack is like.”  Yes, I was a bit snarky.  I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there.  He said “Yes, but I want to know what your attacks are like.”  I started to tell him, I told you last time, but I didn’t.  I said, “severe rotational vertigo, severe tinnitus, want to die!”   “Yes, that’s normal”  DUH!   Stuart them tells him how much my eyes have been vibrating with these attacks.  I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before.  My eyes really dilate, and I have nystagmus really bad during an attack.  I need light or I get really sick, but lights also hurt because my eyes are so dilated.  My eyes hurt so much after just a few minutes, after hours…well dang!  So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating.  Poor thing felt guilty he hadn’t really noticed as much before.  I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.

Back to the visit.  The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast.  I tell him…that makes me sick.  He keeps telling me to look at it.  I look but I will not look fast.  I am not going to throw myself into a spin in his office just to perform his little test.  (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast)  I had already taken 3 or 4 Valium that day because of the attacks I’d already had.  I can tell he gets frustrated with me when I don’t do the test as he wants.  oh well.  He asked what I take for my attacks, I told him, Valium and Phenergan.  He said, well that’s the best.   He asked if I had this happen before.  Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast.  My ear doc had to put me on steroids that tapered off slower.  He said, I told me I only have attacks 2-3 times a year.  I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day.  He said nothing.  He paid NO attention to that.  He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating.  He really heard nothing I said about how this is affecting my life.  He heard nothing about how I can’t focus on things without them moving.  He DOES NOT LISTEN TO ME!  Why?   Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him?  He doesn’t understand what this is doing to me.”  Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….

So he wrote me a prescription for steroids.  Good, that is what I expected.  He told me the dose and I thought…That’s High.  He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose.  He ignored me…”If you have a problem call me”  I just told you I have a problem! Listen to me!  I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin.  He said, “This won’t make you spin, but if you have a problem, call me.”  Hmmm, are you listening to me?

I got the prescription and started it.  The next day I couldn’t stop crying.  I looked that the dosage….and the tapering.  60mg a day for 14 days!  then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea.  14 days then 2 days each…that’s a pretty fast ramp down!  and 60mg of prednisone for 2 weeks!!  I will be going out of my mind!  It is very hard for me to deal with these emotional swings with my bipolar swings anyway.  It makes me feel like I am having bipolar episode, and it drives me crazy.  I can’t trust my own emotions.  I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff.   So, I thought….I can’t do this.  I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there.  It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different.  I’m following his dosage.  He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect.  a much slower taper down, and I know I did fine with it.  I will also be taking half as many pills.

Is this the right thing to do?  Should I be treating myself?  In this case….I don’t really think I’m treating myself.  I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up!  But I know my tolerance to them and I know they do mess me up.  I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive.   I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing.  We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me.  (My point…as I say in my disclaimer, I am not giving medical advise.  I do not advise anyone to ignore what their doctor tells them.  This is just my story.)

Good news.  The steroids are helping.  I’m on day 3 now.  The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot!  Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night.  Yesterday, I didn’t have an attack.  I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long.  So it looks like things are getting better day by day.  Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.

that is the story of my last couple of weeks.

It has been hard.

The last few months have been hard.  Physically and Mentally.  It has also been hard because the doctors I trust are 300 miles away.  I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings.  I moved here feeling so much better, with so much hope, so much promise.  I thought I was ready to handle anything life through at me.  I was wrong.  I’m still trying hard to live in the now.  I’m trying to accept things as they are, and accept my feelings … nonjudgmentally.  that is a BIG thing.  I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright.  I’m just not there yet.  Right now I’m hurting, and I need to be here for a little while, and stop judging that.  I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now.  And I’m not going to judge that.  I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.

Deep Breath.