Feeling Hopeless

I've had a few really great days over the summer.  They make me hopeful that the future could be brighter.

But right now, I feel completely hopeless.  I have been having frequent spells of low blood pressure that do not get better when I lie down.  My go-to medication for hypotension is Midodrine.  The last couple times, Midodrine actually made me worse.  It caused my heart rate to drop dangerously low, in addition to low blood pressure, which causes chest pains.  Now, I have nothing to go to when my blood pressure drops.  The spells usually come on after exercise or some type of activity.  They're usually later in the day, which is unusual for my POTS.  They aren't necessarily POTS-related.  I have lost consciousness quite a few times in the last week.  And it's not like you lose consciousness and then wake up dazed and confused a few seconds later.  These are prolonged episodes of unconciousness or near-unconsciousness.

If my sleep is not restful enough or my body is fighting any kind of infection, I can be in a stupor the entire day.

For this kind of low blood pressure, Florinef is commonly prescribed.  Unfortunately, it raises intracranial pressure and causes me massive headaches.

The only thing that can help me is Thermotabs and fluids.  All day, every day, I chug water.  For every 10 ounces of water, I take another Thermotab (buffered salt tablet).  This is about 12 a day right now.  Yes, I drink at least 120 ounces of water a day.  And over 2000 mg of sodium from pills.  It is all I have right now.

I contacted a nurse at Dr. Grubb's office.  She basically told me to not worry about it.  She reminded me that I have a chronic condition (Thanks!).  She said that IV fluids are not a good long term solution, especially in someone with EDS, cause your veins will all get blown.  She said to only go to the ER if I fall and hurt myself.  I don't, it comes on gradually. So, we just have to accept the spells of unconsciousness.

I cannot take anything else for my depression/anxiety, because I have had serotonin syndrome.  That's a dangerous, potentially fatal condition, so you really can't mess with it.

I am supposed to be raising a puppy and starting to teach piano lessons again.  I don't know when I'll be able to do that, because my condition is so unpredictable.  I don't want to turn away potential students that are inquiring about lessons, but I don't know what else to do.  We clearly need the money, but I cannot commit to anything in my current state.

I know that the overall lesson here is patience.  I know that my condition has highs and lows, and 5 months out of surgery, it should still be mostly lows for someone like me.  I just don't see the light at the end of the tunnel right now.  I have no idea how much better I will get, or how long it will take to get better.  This could be it.  I want to participate in my life, not just endure it.  And I want to be a better wife, family member, and friend.  I just have nothing to give right now.  The only thing I know that could help me get to that better state of health is exercise, but exercise makes me pass out.  I just can't stand being stuck like this.  I can't stand feeling so sick and with such a low level of functioning and a low level of consciousness.

It's really hard when your husband has to check and see if you're still breathing, because you look dead and are completely non-responsive.  And it's hard that no one can help me.  When I'm barely conscious, there's just nothing to do anymore.

These low blood pressure spells could potentially be a mast cell activation reaction, but I'm seriously getting nowhere with that diagnosis.

I still don't have a local doctor due to an insurance problem.  Not like some random PCP would have any idea what to do with me.  There is no help.  Just deal with it.

Sorry for writing when I'm so upset.  I know I'll get past this feeling.  I just needed to reach out a bit.  I know someone reading will relate to these feelings...and others will probably think I'm just a depressed nutcase that should get some therapy.  But in reality, these are just the ups and downs of living with chronic health problems.

5 months Post-op

I had my 2nd total cranio-cervical fusion reconstruction exactly 5 months ago today.  It is a very difficult surgery.  Since I have dysautonomia and suspected mast cell problems, recovery is very prolonged.  It's not fair to judge the success of a surgery based on symptoms at 5 months.  It's better to check at 12 months, maybe even later.  But I'll try to look objectively and see what may be better.

The last month has been challenging.  I was sick with an upper respiratory virus, causing a sinus infection and bronchitis.  For those two weeks, my POTS symptoms were out of control: high tachycardia, lots of shortness of breath, some spells of hypotension, lowered level of consciousness.  Then, I got one of my 4 day migraines.  Luckily, the virus and migraine were gone by August 2, the day we picked up our new puppy!  His name is Charlie.  He is a sweet little Cockapoo.  I'm not allergic to him!  I completely adore this little guy.  Unfortunately, after 4 nights of poor sleep due to the puppy's cries, my whole system shut down.  I couldn't stay conscious, my digestion went crazy, spells of very low blood pressure, tachycardia, shortness of breath, couldn't take care of myself, much less my beloved little Charlie.  So, after 5 days with us, Charlie moved in with my mom.  She and my stepdad are willing to take care of him until he grows up a bit and until I am a bit recovered.  But I really miss him!  I tear up just thinking about him.

The thing is, with all of these complications, my progress has definitely had a setback.  So, I'm rebuilding again...starting with sleeping as much as I can at night, resting as needed during the day, and exercising every single day, as much as I safely can.  My well-being depends on a very delicate balance of rest, exercise, diet, fluids, medications, stress, and most importantly, sleep.  98% of my focus is currently devoted to getting all of these things right, so that I can devote the other 2% to actually living.  Hopefully, this proportion will improve, and I'll be able to participate more in life and work again in time.

The symptoms I'm dealing with the most this week are:
-migraines
-tension headaches
-fatigue
-lowered consciousness
-loss of consciousness/passing out
-tachycardia
-spells of hypotension (not orthostatic)
-shortness of breath
-temperature dysregulation
-exercise intolerance
-body pain
-digestion (usually C, now more D--(friends with IBS will understand)

When things are so hard, it's difficult to see the improvements.  But they are there!  I'll do my best to think of some, as it is important to see the big picture in these difficult times.
-As of today, I do not need to wear the collar at all times.  Admittedly, I've been weaning for a few weeks.  I'll still be wearing the rigid collar in the car and a soft collar as needed for comfort.
-Excluding the muscle tension/tension headaches, I feel capable of going without the collar for reasonable periods of time.  This is a good sign that I have a solid fusion.
-My swallowing has actually gotten better.  I still have good days and bad days with swallowing, but I'm not getting extremely bloated nearly as often!
-I can sit up for longer periods of time.  For less pain, I generally like to sit on the couch so I can rest my head.  But it's still upright, which is better than before surgery!!!
-Before my setback, I think my overall level of functioning was improved from pre-surgery.  I just have to rebuild to get back to that.  Before the setback, I was able to: get dressed most days, leave the house for short trips most days, socialize for about an hour at a time, and do a fair amount of walking (I had reached 1.25 miles.)

My POTS is not better yet.  I'm not to the point where I was before surgery yet.  That will probably take the rest of this year, or more.  This means that I use the wheelchair at times, and I can't stand for long periods of time.  My aerobic endurance is still very low, but I'm working on it every day.

My headaches are not really better.  I either have a tension headache or a migraine (or both!) every day. Either one can be debilitating, although the migraine is most always debilitating.

I am very lucky to have a supportive family.  I also feel very grateful today for a wonderful primary care doctor back in Illinois, who is helping me get what I need through this transition to living in a new area.

Thanks for checking in with me!  Little by little, I'm coming back.  Sorry this post was a bit scattered.  I'm feeling a bit scattered today.  The migraine doesn't help either.

I heard a really great quote yesterday, so I'll post it here:
"Life is mostly froth and bubble; two things stand like stone: Kindness in another's trouble, courage in your own."
--Adam Lindsay Gordon

*I almost forgot: photos of Charlie!  Charlie is my reason to get better.  My motivation to exercise every day.  I want to be healthy enough to bring him home!