Me and My Migraine

TX360 nasal applicator for SPG blocks for headache disorders

I’m happy to say I was able to get into see my doctor on the 18th, I’m sorry to say I still have this migraine. I’m happy to say I have had some relief, I’m sorry to say it has been very short lived.

When I saw my doctor we started the SPG ( Sphenopalatine Ganglion) blocks. You can see the device in the photo above. When they first started doing these blocks the procedure was much more invasive, now I can do it by myself. I’ll show you:

First you get the anesthetic in the syringe
Then you put the device together and place it in your nose (note the long tube that is shown in the main photo is up in the device at this point, not up in my nose)
Fist you just let the plunger fall, that releases the little tubing, then you press the plunger end and that releases the medication, and that’s it. Then you repeat it on the other side.

For the sake of time and because I’m feeling mighty lazy and hurting, here’s a link to an article about how SPG blocks are supposed to work: Sphenopalatine Ganglion Blocks in Headache Disorders

To break this migraine flare that has been going on since April 20th, I am to do these blocks every day for 10 to 14 days. Today is day 9, I’ve had a few hours of relief, but that’s all. I feel that as soon as the anesthetic wears off the pain returns. Sometimes it is within a few minutes, sometimes I get an hour or two, but never longer than that. I had hoped that the time would build up and up as the treatment progressed, I’m losing that hope now. There have been times that the pain has been so severe that I have considered going back to the Emergency Department, but why? I know it would do no good.

This has become very hard to talk about. People ask me how I’m doing and I find myself lying. I don’t want to tell anyone that I’m still in so much pain. I don’t want to keep avoiding social activities. I’ve forced myself to do things, but I did have to excuse myself because I was getting too sick. I’m embarrassed. I know people do not understand. I know they are tired of hearing it. I’m tired of living it. I’m tired of saying it. I’m tired of hearing people say they are sorry. How long can they continue to feel bad for me. I don’t want pity. I know they can’t understand. If this is my new normal I will have to learn to live with it. I have to learn to push through it. To be able to say, “I’m fine” when people ask, and somehow mean it. I have to be able to put on the face and be okay with that. No one wants to be around someone who is consumed by pain all the time. How do I answer these questions? No I’m not better, but I’m okay…..some days, some days I’m not okay, but that’s okay too.

I can hear it….. It’s just a headache. Is she ever going to get better? Can’t she just take something? Why doesn’t she get a better doctor? She exaggerates. It can’t hurt THAT much. She’s ALWAYS sick. I’d do this or that if I were her….massage, integrative medicine, acupuncture, chiropractic, this or that supplement, this or that diet, this or that exercise, a certain pillow, essential oils, TMJ treatments….believe me I’ve tried so much my head spins from it all and I’m still considering more!!

Can you understand why I would lie about how I’m feeling? Why it’s getting so hard to talk about it? I am just so tired.

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

 

My Chronic Migraines

headache-7
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

 

Good – Bad – Ugly…. Sometimes it’s Pretty, isn’t it?

Thank you all for the outpouring of support and encouragement about my blog and writing and well just me being me.

The comments here and on Facebook, emails….well, everywhere…I was overwhelmed by the love!

I’m sorry I haven’t posted before now….I’ve had some bad and ugly days recently….there’s been come good and pretty times in there too, maybe not whole days, but I’ll take it!!

First right before I went to the appointment I’m about to talk about, I broke my pinky toe.  Yep, I mean within the hour before, I caught my toe on my nightstand and OUCH!!  I saw stars and everything.  Pretty little stars.  *snort*  It’s been a while now…it is still slightly sore, but it has all healed, finally!!  It did mess up walking on my hip a bit though….same leg.  But I didn’t fall!!  Good thing!!!

I was very excited the beginning of June I saw a new neurologist here in Charlotte.  She runs the Carolinas Headache Clinic in Matthews, NC…so it really isn’t in Charlotte, but it is so close it may as well be.  The first appointment I had with her she spent over 2 1/2 hours with me.  I don’t know if that is her normal time for a new patient or not.  I know she sets aside a longer appointment for a new patient, but I was also her last patient for the day so she took her time.  She gave me a very thorough exam and we talked at length about my medical history.  She was very interested.  I was very impressed.  I love my neurologist at Duke, who also specializes in headache pain (my doctor at Duke recommended this doctor, they know each other well).

As much as I have loved my doctor at Duke, I think this doctor will be able to really concentrate on me more.  She won’t be so over whelmed with all the influx of patients from the system at Duke.  (I hope that makes sense)  The doctor here is very interested in my Chronic Persistent Daily Headaches.  (I have a headache all the time, it ranges from about a 3-5 on a scale of 0-10 pain scale, I have had this headache since I was 11 years old, right after my first migraine)  She believes if we can break this headache then we can break the migraines and cluster headaches.  Wouldn’t that be nice?

She started me on a new medication, it was to hopefully help with the daily pain of my head and my all over pain.  Unfortunately, it hasn’t worked.  However, I don’t think we can judge it fairly.  I am on a drug called Limbrel, this helps with inflammation and I had problems getting my prescription for over a month.  (long story short…the doctor faxed in the prescription but the pharmacy said they never got it…this happened over and over, finally they got it straight…why it took so long, well I have no idea, but I finally have it!  3 months worth, thank goodness.  I had no idea how much this was helping my joints and all over pain, I was having trouble typing my joints in one of my hands were hurting so much.)

The past month has been filled with the worst migraines.  Let me give you a little run down….Out of the last 25 days I’ve had 22 migraines, 1 cluster headache, and 15 attacks of vertigo.  On July 2nd a vertigo attack started around 3pm and lasted until after 3pm on July 3rd.  (July 2nd was my birthday…I will just have to celebrate 364 Un-birthdays!!  Want to have a Mad Hatter Tea Party with me??)

Can you guess why I haven’t been posting?  Or reading my dear friend’s blogs?

I admit the depression took hold of me and jerked me around a bit.  I think I had some reasons, even if I didn’t have Bipolar I disorder, but I admit my emotions do go a bit extreme because of my illness.  The demons didn’t knock on the door, they busted it down!  For a while there I thought I was lost.  I was drowning, big time.  I was having panic attacks, heck I’m still having a few of those.  I’ve been having trouble going out of the house again for few of having attacks.  I hadn’t been doing my mindfulness practice…except during vertigo attacks, and sometimes not then, sometimes I would completely freak out.  (however, I’m relieved to say that most of my vertigo attacks have been mild, by that I mean slow rotation, they haven’t been rapid spinning….but I won’t go into detail about what they were like.  Just know they aren’t as scary. However, I will just say….they are exhausting.)

I’ve been trying hard to pull myself out of the depression.  The odd thing about this, the medication that the neurologist put me on is actually an antidepressant.  I was really hoping it would help with this too.  However, I think the fact that I was in a lot of pain, and had so many headaches and vertigo when the medication I was taking was supposed to be helping…well this was making me more depressed.  Makes sense right?  Plus I have a few other things going on in life that are stressing me out too.

Recently I’ve been diving into my mindfulness studies again, and trying to meditate.  Meditation doesn’t fix things, but it just makes me be here.  I was so caught up in the fact that I was in pain, that is where I was, I was hurting, angry, sad, scared, did I mention angry…oh you would not believe the anger that was popping up!  wow!  I hate it for Stuart the past few weeks.  At least he couldn’t hear the even more snappy things I was saying in my head.  ewww.

something I need to remember
something I need to remember

So, I’m focusing on just being here.  I’m taking a lot of deep breaths, and I’m just trying to be me.

On a different note….I’m in physical therapy now to help my hip get a bit stronger and have more range of motion.  I have a day in the gym one day a week and a day in the pool one day a week.  The pool is wonderful.  However, I’ve had to miss a few sessions because of the pesky vertigo.  The last PT session, the therapist really showed me that I am not as strong as I thought I was, she kicked my butt!!  Whew!  However, I’m afraid that the new exercises that I have been doing have aggravated the back injury.  I have been in so much pain.  The sciatic nerve has been shouting at me.  It’s not just yelling on my left side now, it’s screaming on both sides.  I’ll talk to her at my next session tomorrow.  I may have to go see the spine doc again.

Well….I can’t think of much more to say today.

I don’t know if I’ve covered good, bad, ugly…and a little pretty, or not.   But there is some of all in my life.

Good….focusing more on mindfulness again.

Bad….vertigo, migraines, back pain…being really mad there for a while.

Ugly…umm, vertigo sometimes, and you don’t want to see my face when she’s kicking my butt in PT.  hahaha

Pretty….My new headache doctor, she’s really pretty – but not as pretty as my Physical Therapist, oh my!  The feelings I get from both my new headache doc and my PT.

My Head Hurts

Headache  by Sinornis
Headache by Sinornis

I haven’t talked much about my headaches in a long time.  I wrote a post about 10 weeks ago about my last Botox treatment for my migraines.  I was thrilled at how well this treatment had been working.  I SPOKE TOO SOON.

After the treatment I started having migraines that did not stop.  I had a month-long migraine.  After calling my doctor I was prescribed a short course of high dose steroids, this helped the migraines, but ended in a horrendous Vertigo attack, that caused me to be put on a month-long course of low dose steroids.  Through out the month I was still having headaches.  The break in headaches during the short course of high dose steroids didn’t last long.

I have been having not only migraines, but a lot of different kinds of head pain.  The one headache my doctor agrees I’m not having is Rebound Headaches. also know as Medication Overuse Headaches.  There are certain medications that you take on a regular basis that cause you to have rebound headaches, I do not take most of these medications, and the ones I do take I do not take on a regular basis.  I am extremely cautious about this.  I am very afraid of getting rebound headaches.

For weeks, months now, I have been having severe pain.   It wakes me up at night, screaming, often yelling NO, NO, NO….with tears running down my face.  I’ve been studying Mindfulness Based Stress Reduction to help with chronic pain and this has helped, but I can’t control the pain when I’m asleep.  I dream about being in pain.  I’m nauseous.   I wake up so exhausted and I have no idea how to stop this pain.   There have been two different types of headaches I’ve been getting that are different from the migraines.  One is a sharp pain that feels like a poker stabbing me in the eye, my eye waters and I can’t open it all the way.  It’s only on one side. It is the most intense pain I’ve ever felt.  I have a much greater appreciation for the song Maxwell’s Silver Hammer by the Beetles, however I wish he would make sure I was dead at the time. (this is only the pain talking)  I can only rock back and forth and pull my hair, I scream….it came at the same time each day for 5 days, it would last for about an hour or so, stop then return in about an hour…this would have for 4-5 times each day.  Then they stopped, for 5 days, and started again, for 3 more days.  To date, they haven’t come back so far…..Yesterday I was seen at Duke’s Pain Clinic, I saw my Neurologist’s (who is a Headache and Facial Pain Specialist) Nurse Practitioner, since this was an emergency appointment.  I now have a new diagnosis.  CLUSTER HEADACHES.

Cluster Headaches (have been called suicide headaches) occur in cyclical patterns or clusters, which gives the condition its name. Cluster headache is one of the most painful types of headache. Here’s a link to find out more about them at the Mayo Clinic site. Cluster Headaches via Mayo Clinic   There are many other good resources on the internet too.    Cluster headaches can go away for weeks, months, even years.  They often return with seasons.  I hope mine never return.  If they do, I know they will end, and that will get me through it.

I’m also experiencing a lot of pain in my neck, this pain also comes on while I’m sleeping.  It rarely happens when I’m awake.  It does cause some of my muscles to tighten, but the main pain does not feel muscular.  I must have a CT scan to try to find out more information.  This pain started after the Walmart expedition.  When I was in the car I was not in a very good position, my head and neck were at an odd angle.  I don’t know, but I think this may have attributed to this pain.

So every night at 4 am I wake up in pain.  EVERY NIGHT.  I try to help it, change position, meditate, massage, anything…. and it will feel better, I will go back to sleep, and about 15 – 20 minutes later I’m awake again…..OH it hurts!  and we start again….it goes like this until I give up.  I try so hard not to wake Stuart.  No need for both of us to lose sleep.  I’m exhausted.  Sleep deprived. Some days I can nap a little.  Sometimes during these naps I will wake up screaming.  It is terrifying to wake up screaming and crying.  I know my husband is so frightened for me.  I hope the CT scan will give us some answers.  I also hope it is something that can be easily fixed.

Why suddenly am I having headaches that wake me up with so much pain?  Why am I having headaches that are so different from headaches I’ve had before?  We don’t know.   There is no known reason why Cluster Headaches start, some studies suggest certain things, but there are no conclusive answers.  My other headaches?  We are working on finding that out.   My CT scan is schedule for June 16th, and my return visit to the Pain Clinic is on the 19th.  Hopefully, I’ll have some news then.  How I’m going to sleep until then, that is a mystery……but one I’m sure I will unravel.

Bang! Bang! Maxwell’s silver hammer
Came down upon her head
Bang! Bang! Maxwell’s silver hammer
Made sure that she was dead