My Chronic Migraines

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photo of and by w. holcombe

I have Chronic Migraines.  I’ve been told this before, it was said once again yesterday.  I’ve met a number of Neurologist who thought they could make it better.  I still have Chronic Migraines.

I’ve been to 2 Neurologists who are Headache Specialist.  There aren’t many of these doctors out there, I’m lucky that I have been able to see 2 of them.

The first specialist I was seeing was a Duke, I moved to Charlotte and started seeing a specialist here.  I never thought we’d get to the point where we are now.

I’ve tried so many medications.  I’ve tried Botox, and well just so many things.  There are some medications I can’t try because of reactions I’ve had to other medications.  My doctor is at the end of things to try.

I was taken off Topamax when I had the seizures because they thought that it may have caused them, now that we know it wasn’t the medication I can go back on it.  My migraines did get worse when I was off of it, but my headaches were a long way from being optimal when I was taking it.

Over the last 3 months I’ve had a migraine ever day except 8.  This does not include the headache I constantly have.  When I first started seeing the specialist here she thought we could get the daily headaches under control and then the migraines would get better, well neither of those things happened.

Now I’m going back on Topamax to at least get me back to where I was.  Having migraines about 15 days a months instead of about 30.

I saw my specialist yesterday and she said she is looking out for studies for me to participate in.  There is nothing else she can think of.

I’ve decided to go to a Functional Medicine group to see if they can help me. Unfortunately, they are not covered under my insurance so this can get quite costly.  I’m not sure how much I will be able to afford.

(Functional medicine is personalized medicine that deals with primary prevention and underlying causes instead of symptoms for chronic illness and disease.)

This is Invisible Illness Week.  I’m not sure I’ll get it together enough to really post much about it, but Migraines are an invisible illness.  I look perfectly fine yet I’m struggling every day.  I have Persistent Daily Headaches and Migraine headaches.  Every day my head hurts.

Remember, just because someone looks perfectly fine doesn’t mean they aren’t suffering silently.  We may look great and still be sick.

#ThisIsChronicIllness #InvisibleIllness

 

Stress should be a 4 letter word

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Stress is widely known to cause the chronically ill to get sicker, to have flares, to generally feel worse…  Stress is an ugly word that I hate to hear my doctors say. “This is being made worse because of stress.”, “You need to get your stress under control.”  I can’t tell you how many times I’ve heard this.

The amount of stress I’ve been under the last few months would make the healthiest person feel bad, for someone who is chronically ill, with both physical and mental illnesses this has been a very trying time.  I’m sure you are wondering, “What has been going on in Wendy’s life?”  Well let me tell ya!

This may not be in order, I’m just going to get it all out.  We moved, we had a friend move in with us, I was having vertigo a lot for a while, I’m constantly afraid I will have a vertigo attack, I’ve been having migraines daily for months, my father passed away, I went through all the stress building up to my father’s death, the stress of the funeral….I feel like it has been non-stop.

I’m wondering if my migraines are worse because of the stress?  My chronic daily headache now has a base line of a 4-5 where it used to be 2-3, on a 0 – 10 scale. The pain in my neck and upper back due to degenerative discs has greatly increased, I’m in physical therapy for that now.  (going to PT is another stress, as Stuart has to take time away from work to take me to my appointments, this time has to be made up, that’s hard on both of us; and some PT sessions seem to make things worse, that’s a stressor too.)  I can’t take pain relievers which causes a certain amount of stress too because I never have any relief. My tinnitus has been very loud.  Some days my balance is worse than usual.  My emotional state is not well.  I’ve been depressed. (yes I know I have reasons to be sad, but this is more than that).  My anxiety is very high.  I am extremely irritable (I’m shocked at how much Stuart and I have been arguing, and bickering, normally we rarely argue)  I’m restless, yet tired, excessively worried, feeling like I’m trembling inside, very sad, my appetite is out of control, I am extremely self-conscious, I have very little self-esteem and I keep beating myself up for things I have no control over.  I can’t relax; I can’t give myself a break; I’m not being kind to myself.  I’m just a mess.

I’ve been having a very rough time.  This is upsetting because I’m at the best place I’ve been with my vertigo than I’ve been in a couple of years.  I haven’t had a bad attack in almost 2 months.  This is surprising because it normally gets worse when I’m under a lot of stress.  However, It is often much better during the summer.  I know I would be feeling even worse if I was having vertigo as often as I normally do.  But I can’t stop having profound fear that it will get worse any moment.  I’m having a hard time enjoying this break because I’m so terrified I’ll have an attack at any moment.

I was trying to take better care of myself, but I have to admit in the last few weeks most of that has gone out of the window.

When we are under stress it is imperative that we practice self-care.

Things I plan to do to increase my self-care:

  • Be sure to see my therapist and be open and honest during appointments.
  • Give myself a break.  This is more easily said than done, but I need to really make a conscious effort to do so.  When I have negative thoughts or feelings I want to start being more gentle with myself.
  • Meditate more.
  • Take more baths.
  • Watch funnier TV shows and/or movies.
  • Read funny or inspirational books.
  • Cuddle with my hubby.
  • Cuddle with Max (the cat) and Kiki (the little dog).
  • Eat healthier.
  • Do as much as my health will allow that makes me happy.
  • Be creative.
  • Stay in touch with those who love and nurture me.
  • Try to get outside more.
  • Keep up a gratitude list every day.
  • Laugh
  • Sing Silly Songs
  • Dance
  • Give my body 10 minutes of mindful attention.
  • Take a nap.
  • Take Deep Breaths
  • Get Positive Feedback (ask 3 friends what they love about me)
  • Write out my thoughts (for 15 minutes free write what ever I’m feeling, I can tear it up after, just get it out.)
  • Drink water (I’ve been drinking soda recently, something I haven’t done in years)

 

How do you take care of yourself?  Any self-care suggestions?  I’d love to hear them!

 

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