Update 5.10.2016

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It’s been a while since I’ve written a simple update about me.  Other than the migraine scenario.

What’s going on right this second?  My head hurts!  Yes I’m still fighting migraines.  I’m also having vertigo again, every day for the past week.  Yesterday I had it all day long!  It would go absolutely crazy, then it would slow to just barely moving, then it would go crazy again.  This went on for 12 hours.  I’m starting a regimen of steroids.  I don’t like being on steroids because they think that may be what caused the Avascular Necrosis in my hip, but I’m desperate.  My headache speicalist and my ear doctor both agree that steroids is the best thing to stop this cycle.  So here we go again.

I finished my Vestibular Rehabilitation Therapy.  It was a great experience.  I hope it did a lot of good.  I say hope because I wasn’t having much vertigo when I was going through therapy.  I was amazed at how well I progressed through the exercises.  On the last day, I had a vertigo attack start right there in the exercise room.  All I could do was hold on to Stuart and my therapist and squeak out, “I want to go home.”  A wonderful way to close out an otherwise great experience.  Since that last appointment I haven’t been able to do any of the exercises without falling.  I’m sad and pissed.

I’ve decided not to do the gentimicin injections.  There are so many risk.  When I’m at my worst I will think I don’t care about the risk, I’m willing to try anything, but I just went through a month of very little vertigo.  If I have the gentimicin injections I may never have good days.  I might not be able to learn how to balance without my ears.  And it does nothing to stop the vertigo caused by migraines.  What if most of my vertigo is migraine related?  I would still have vertigo and have to fight having no balance system in my ears.

My new ear doctor is thinking about trying steroid injections in my ears to see if it helps. (one ear at a time) But we will wait until I’m really bad again.  (If things keep up like this past week, we’ll be talking about this fairly soon.)  Steroid injections don’t carry the risk that gentimicin does.  It wears off, so if it works it often has to be repeated every 3 months. Since they think my Menerie’s is autoimmune, this is a good diagnostic tool, and if it makes me feel better, great.  Therefore, this is a good thing to try before deciding on gentimicin.  My new doctor is not a fan of gentimicin, but did not say he wouldn’t rule it out as a very last resort.

I’m sad right now.  Things aren’t going well.  Too many times I feel I’m saying, “I’m having a bad day.”  There have been days I’ve been so angry I felt like I didn’t know myself.  For the first time in a long time, I feel handicapped.  I hope all of this is part of my health not doing well, added stress and maybe menopause.  Not my bipolar medication taking a nose dive.  We’ll have to wait and see.

I have a couple of questions for those of you who have seen a naturopath or holistic doctor; Did seeing one help you?  How did you chose which one to go to?  I’ve been thinking about seeing one to try to get my over all health better, but I have no idea how to figure out who to pick.

As always thank you for supporting and caring about me.

 

Migraine Madness

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My migraines are never under a 6, the average is a 7.5.  10 means you go to the Emergency Room.  Unless I was dying I wouldn’t go to the ER for a migraine.  I do not think they could help, and I do not want to labeled a drug seeker.

This post is personal.  No links to studies to back up what I’m saying.  Nothing more than what is happening to me.

On March 22nd I had a migraine.  Every day since March 27th, except 1, I’ve had a migraine.  Yes, I’ve had a migraine for 43 days out of 44.

This is not a medication rebound headache.  I have not taken medication for more than 15 days in a given month.

Can you imagine the days I haven’t used medication?

When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds.  I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.

I’ve gone through a DHE protocol of 3 shots for 3 days.  During this time was the day I didn’t have a migraine.  I still had a headache, but it wasn’t a migraine.

Why is this happening to me.  Well I have a guess, but I don’t really know.

After I had my seizures my Neurologist told me that Topamax can cause seizures in some people.  This medication is used to prevent migraines, but it is also used for seizures.  So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy.  Our mail order pharmacy didn’t fill my prescription on time.  They had a problem with the prescription and didn’t tell anyone.  Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.

So I ramped down and got off the Topamax and the seizures stopped.  I was off of the Topamax for less than a month when these migraines started.  I normally have about 15 migraines a month, some months a little more.  Very few months have I had less than 15.  I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did.  Right now I’m so ready to go back on this drug.  If I have a seizure I’ll stop it.  (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.)  Unfortunately, I kinda doubt my doctor will be willing to take this risk.  Maybe there will be something better.

Today my neurologist called in another medication for me.  I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days.  (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)

If this new medicine regimen doesn’t work I don’t know what the doctor will do.   I’m lucky that my neurologist specializes in headaches.  She actually runs a Headache Clinic.  I’m confident we will be able to get these migraines under control.  She won’t give up.

During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought.  I do question if this vertigo was Migraine Associated Vertigo (MAV) .  I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not).  Rotational vertigo is by far the worse.  I had a bought of that yesterday, but it wasn’t too bad.  The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever.  Yesterday could have been MAV, I just don’t know.  It was a very bad day.  I woke with a Migraine at 9.5 on a 0-10 scale.  This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo.  I’m leaning toward Meniere’s because my hearing was way off all day.

Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo.  I’m not sure why the rotational vertigo has calmed down, but I’ll take it.

I haven’t been around so much this past week, because the pain is getting to me.  I’m falling into Migraine Madness.

So, all my ramblings lead to one thing.  My head HURTS.

6 Signs Your Symptoms Could be a Vestibular Migraine

migraine eyeAs I’ve written about before, I have vestibular migraines, with Migraine Associated Vertigo (MAV).   It is hard to diagnose this type of migraine,it’s also very difficult to figure out if your vertigo is coming from MAV.  I came across this article the other day and thought it was worthy of sharing.

6 Signs Your Symptoms Could be a Vestibular Migraine

Following are the Symptoms they talk about, please go to the actual article to read about each of these in detail.

1. You have a personal or family history of migraine.
2. You experience vestibular symptoms in the presence or absence of a migraine headache.
3. Your vestibular symptoms vary in their severity over time.
4. In an episode, you experience other classic migraine symptoms.
5. Your symptoms increase with exposure to known migraine triggers.
6. Your vestibular symptoms significantly reduce your quality of life.

From this article there is a link to a blog post on My Migraine Brain that I found interesting. Valerie’s Vestibular Migraine

I hope you will find this as informative as I did.

If you have any questions about my experience with vestibular migraines and MAV, please ask.  I’m happy to keep the conversation going.

The Future is Scary, with a side of Hope.

It seems appropriate that I’m writing this on the eve of a new year, what better time to look toward the future?

For me, contemplating the future is more than a little scary…. let’s just say my anxiety about it has been more than I ever thought was possible.

After my illnesses changed my life, I learned about Mindfulness Based Stress Reduction (MBSR), it struck me how it has helped many people in many aspects of life, but mostly I was struck by how much it often helped people who are ill.  I had already learned of mindfulness during my studies in Buddhism, and while practicing yoga, but I admit I didn’t practice it regularly.

Over the last few years I’ve learned more and more about mindfulness, as I continued to studied Buddhism and MBSR, I’ve worked hard to live my life in the moment.  I don’t dwell in the past, (all of that is gone)…. I don’t worry about the future, (that hasn’t been written yet)…I try hard to live in this very moment, because that is all we truly have.

Yes, at times I still have moments when I get upset that I can’t do what I used to, and get upset about what might happen…but I don’t dwell on it.

Then we started making plans… how we are going to try to make things better for me….decisions about this unknown future, decisions that I have to make. Suddenly, I HAVE to look at the future. I HAVE to think about it.  And it really scares me.  Suddenly, I’m scared about being like thbe mindful of the futureis forever.  I thought I had accepted that and was okay with it.  Not that I was giving up, just that I accepted things if they didn’t change.  At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change.  Now, I suddenly have options….plans.  I am having a very hard time not being anxious about the future.  I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back?  The main thing I know is that, I don’t want to lose myself in this quest to get better.  I don’t want to be afraid.  If I don’t get better, I need to know that’s not the end of the world.  I don’t want to start having to accept all of this all over again.

Each day I have begun to get more and more upset about things I simply can’t do.  As usual, most days all I can do is go from the bed to the chair in the living room.  But I tried hard not to let this get to me before.  I tried hard to make the most out of every moment…no matter what.  I’m trying now….but I am not doing as well as I have been.  Then I hear the voice in my head….Be Gentle With Yourself.  and I Breathe.  I am doing the best I can.  Yes, I’m a bit overwhelmed right now.  Everything is changing, all of a sudden, it’s going to take me a minute to keep up with it….deep breath….and I must remember, it still has to happen one moment at a time.

Okay, let’s move on from this and let’s talk about what the plan for my future is right now.

I was going to write a post right after my visit with the new ear doctor here in town, but I decided to wait until after the tests and the results.  I was supposed to get those yesterday, but I had to reschedule my appointment,  guess who was too sick to go?  Surprised?  I’m not….I have cancelled so many appointments because of vertigo, you just can’t imagine.

So, I’ll give you a break down of what is going on as of now…..

I saw the new ear doctor here.  So far he seems pretty good, I was impressed with his knowledge about Meniere’s, and he is very willing to work with the doctor from John Hopkins.  He suggested I start taking a low dose of Valium twice a day to try to keep my vestibular system calm.  He wants me to keep track of how much Sodium I’m eating.  (Okay, I laughed at that.  I know I don’t intake much sodium but since I haven’t been keeping a record he was not convinced.  I have been eating a low sodium diet for years, I know how much sodium is in almost everything, I don’t eat processed foods, and if I eat out I order everything without seasoning….yes I know that is boring, but it is safe with all of my food issues.  So I tracked my food since I saw him, I admit I was curious too, the results?  I normally consume just under 1000mg a day, I haven’t been over 15o0mg in any given day.  They say a low sodium diet is 2000mg a day.  I don’t think I have a problem there.)   I’m starting vestibular therapy on January 12th, we’re going to start training my eyes and body to balance without my ears.  I am to continue working with my headache specialist to get my migraines under control.  We will talk more about killing off the balance center after doing all of this and seeing if it helps.   Also after seeing the results of the vestibular testing I went through, we want to see if one of my ears is close to being dead already, if so we may go ahead and kill that one off, it may be causing much more trouble than the other.

(just let me say, I’ve been through these tests before and it wasn’t so very bad the first time, this time, it was absolute torture.  I cried.  I am not that kind of person.  If my husband hadn’t been back there with me, I don’t know how I would have gotten through it.  The person giving the tests told my husband she thought I was suppressing, because some things that should bother everyone I was not showing too much of a response on.  I thought that was strange.  I didn’t feel like I was suppressing, but after I’ve been going through this for so long, I’m sure I automatically try to not have vertigo when it is coming on.  I didn’t throw up, I almost did, I had cramps like dry heaves were coming, but no vomit.  Yay!  it really takes a lot to make me throw up now.  I rarely throw up during an attack now.  I get really nauseous, but I rarely throw up.  I always thought it was the meds.  Heck it’s already ruined my teeth and caused burns in my esophagus, I’m very happy it stopped.  Anyway….I’m very interested to find out the results of the tests, and upset I didn’t get to go yesterday.)

He does think my Meniere’s is definitely autoimmune.  Not that I want an autoimmune disease, but it does explain a lot.  Most of my doctors have felt I have symptoms that lead to one, but haven’t been able to put their finger on it.  I just have so much going on, and everything gets worse with stress, and gets better with steroids.  I often run a fever and no one can find a reason.  I have a marker for an auto-immune disease, but the one I have a marker for I do not test positive for….however, that is a red flag that I could have another.  They believe they simply do not have a test for the autoimmune disease I have, or I don’t test positive for it.  Like a friend of mine, has rheumatoid arthritis, but he always tests negative for it.  It is visible on all scans and he responds to treatment, but the test for it comes back negative.  So, in other words, we can’t prove it, but it is thought that it is an autoimmune disease, at least in my case.

So, there is the plan for now.  I don’t know what will happen.  How it will change.  Or anything right now.

I feel that there will be a lot of change around the corner.

The future is scary, but it holds promise, and hope…..something I haven’t had in a long time.

 

Migraines kept me away…let’s talk about it

It’s very hard for me to start writing again after I have been away for so long.  Especially after I wrote 2 posts that I am very proud of right before I had to go away.  Why did I go away?  Because my symptoms have been worse than usual.  Specifically my migraines.

Me with Migraine and Minor Vertigo...by w holcombe
Me with Migraine and Minor Vertigo                    by w holcombe

I won’t go into a lot of detail about what happened to me specifically.  Let’s just say, my migraines have been off the charts.  Lights hurt, Sounds hurt, Smells hurt….yes – Smells Hurt!  I’ve spent many days in the dark, without my cochlear implants on, filled with medication to make it so I wouldn’t throw up  (it didn’t always work), and some days I had to wear a mask to help keep out any smells that were coming in (and we keep our house as scent free as possible).  I’ve also had a lot of Migraine Associated Vertigo (MAV), or Vestibular Migraine, during this time. (you can read more about MAV on the Vestibular Disorders Association Site…just click here.)   I have chronic migraines.  Having chronic migraines means you have at least 15 migraines a month for at least 3 months a year.  (normally, you have migraines more days than you don’t)

A lot of people think migraines are “just a headache”, they aren’t.  So I’d like to take a little time to talk about migraines.

Headache migraines are moderate to severely painful, get worse with physical activity, are throbbing and often worse on one side, cause a sensitivity to light, sound, smell and last 4-48 hours (or more) without treatment.  If you have any of these symptoms, please talk to your doctor.  You do not have to have all of these symptoms to be classified with migraines, you can have a few.  There are also different types of migraines.  You might want to learn a bit about the different types of migraines…there is a list..here…with definitions and all that kind of stuff.

All the information I am sharing below comes from The American Migraine Foundation you can find out much more information there.

  • Migraine is an inherited neurological disorder.
  • One in 4 households has a member with a migraine disorder.
  • Migraine is 3 times more common in women than men, and will affect 30% of women over a lifetime.
  • The World Health Organization places migraine as one of the 20 most disabling medical illnesses on the planet.  Chronic migraines are even more disabling.  Yet it is almost impossible to get disability due to migraines.  If you have another condition and you can add migraines to it, they might listen to you, but when I filed, they were hesitant to even mention my migraines, even though they are extremely disabling.
  • Those with migraine are more likely to have depression, anxiety, sleep disorders, other pain conditions, and fatigue.
  • There is no cure for migraine. Treatments are aimed at reducing headache frequency and stopping individual headaches when they occur.  And constantly trying to find the right medications with the fewest side effects to help with this goal.
  • Prophylactic treatments (to reduce headache frequency) may include avoidance of migraine triggers, medications, physical therapies and behavioral therapies.  This is great if you can figure out your triggers.  Also, if your trigger is weather related, how are you going to avoid that?  I can’t stop the weather from changing.
  • Abortive treatments (taken when a patient has a headache) include over-the-counter pain relievers and prescription medications.  This is great, but you can’t take too many of these because they will cause medication overuse headaches (rebound headaches).  See more information below.  I am constantly aware of this and often afraid to take medication even though I’m in severe pain because I don’t want to go through withdrawal symptoms.
  • Prophylactic medications reduce headache frequency by 1/2 in only about 40% of patients who take these medications.  And the 60% just suffer??
  • Medication side effects often limit the use of migraine medications.  Oh yes.  I know this very well.  Severe itching, causing severe stomach pain, heart palpitations, constipation, diarrhea, tingling in my extremities, a change in what things taste like (the last two I put up with until the medication stopped working), Rocesea, low blood pressure…..It’s kind of scary sometimes isn’t it?

I only just touched on the surface of migraines.  There are many different types of migraines.  I haven’t even talked about all the symptoms I have.

I would like to talk a little bit more about the treatments.

Many of us cannot get the amount of medication we need each month because our insurance will only cover a certain amount.  Insurance companies will often only allow only 9 pills of triptans per month, this is an abortive medication.  Sometimes I have to take 2 when I have a migraine.  That would only cover 4.5 migraines.  If it covered 9 migraines that wouldn’t be as bad, but if you need to take 2 for a migraine, you are in big trouble.  This medication works best if you take it as soon as you feel a migraine coming on.  Everyone I know always waits until they absolutely have to take it because they don’t want to waste those pills.  This is so sad.  Ideally we don’t have to take more than 9 abortive medications in a month, but that is in an ideal world.  Of course, taking to many will cause medication overuse headaches….discussed below.

It’s best if you have a preventative medication, this will reduce or eliminate most of your migraines, if it worksUnfortunately, we haven’t found a preventative medication that works for me.  I have had some work for a while, then they stop.  We are constantly trying new things.  Until then, I’m afraid to take my medication, until I know my migraine is to the point I can’t deal with it on my own.  And that is often too late for the drug to work properly.  It’s a Catch 22.

We also have to worry about Medication Overuse Headaches, formerly known as Rebound headaches. Defined by the Mayo Clinic Rebound headaches (medication-overuse headaches) are caused by regular, long-term use of medication to treat headaches, such as migraine. Pain relievers offer relief for occasional headaches. But if you take them more than a couple of days a week, they may trigger rebound headaches.

It appears that any medication taken for pain relief can cause rebound headaches, but only if you already have a headache disorder. Pain relievers taken regularly for another condition, such as arthritis, have not been shown to cause rebound headaches in people who never had a headache disorder.”

For extensive information on Rebound Headaches,  The Migraine Trust has a great article titled Medication Overuse, it if very informative.  If you have headaches of any kind, and find yourself reaching for medication more than 10 days a month, I encourage you to read this article.  This can also include the use of caffeine.

Another issues migrainers face is that we are often labeled drug seekers.  I can’t even take narcotics.  I have had a migraine that has been so bad I couldn’t see and was throwing up, but would not go to the ER, because I know how so many friends have been treated so poorly there.  They have put them aside and just tell them they aren’t going to give them any drugs.  I don’t want narcotics.  There are specific migraine medications that I want.  Luckily, my doctor has taught my husband how to give me those shots so I have them at home.  I’m in the minority, I’m a very lucky patient.  I am able to see a neurologist who specializes in headaches.  There are very few of these doctors.  Most people with migraines have to go to a neurologist who see people with many types of neurological conditions, my doctor is very specialized.  All she does is headaches.  It’s great.  She is working very hard to get my headaches under control.

There is a great infographic that gives wonderful information on Migraines here, and another on Chronic Migraines here.

That’s all I have to tell this time around.   I have a lot more I’d like to share….not about migraines, at least not right away *smiles*, I hope I can come back very soon.

If I don’t get back before tomorrow…oh who am I kidding, I’m not going to get back before tomorrow….

I wish you all a Happy Thanksgiving!  And I want you all to know how very Thankful I am for you.  You are pretty darn special to me.

Dark and Silent – A day with a Migraine

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When a migraine really takes hold of me, it’s time for a day with no light and no sound.

Take my medication and try to sleep.  Oh but the pain, sleep just will not come.  A tiny bit of light maybe?  Oh no, not yet.

I must say I’m grateful that I can just leave my cochlear implants off and I’m in silence.  I don’t have to worry about sounds sending me into an abyss of pain.  My room is cloaked in darkness.  I do have to have nightlights, they all point to the floor, showing as little light as possible.  If you are like me and have Meniere’s Disease with hearing loss, you will understand why I must have some light.  There are TWO main reasons:

First, I cannot walk in the dark.  Literally, I cannot tell the direction I’m going in, often I can’t tell if I’m going up or down.  Walking in the dark, is simply not something I can do.  I haven’t been able to stand up in the dark for many years, long before I was diagnosed, or showed any signs, of having Meniere’s.  I remember being told I was just thought to be a little off.  I also get Migraine Associated Vertigo, another reason why it is not advisable to walk in the dark when having a migraine, even if I didn’t have other balance issues.

Second, I cannot hear in the dark.  Let me explain.  The only way I can hear…really hear anything, is with may cochlear implants.  If I don’t have them on, I can’t hear.   I have to see to hear.  I have to read my husband’s lips or the little bit of ASL (American Sign Language) that we know.  That’s the only way I can communicate.  Yes, he could write things down, but I’d need more light to read it than I need to see his hands talking to me.

After taking my rescue medication, then my backup medication when that didn’t work…I finally start to have some relief.  No I’m not pain-free, I’m just not lying on the bed with a huge ice pack on my head wishing that someone would just cut my head off!  The pain has gone from being very close to a 9 (10 is going to the ER pain), to about a 6 or 7.  Remarkably, this amount of pain I can deal with fairly well.  Don’t get me wrong, I’m not bragging that I can take the pain…Oh no!  This comes from the fact that I have Chronic Daily Headaches, so every day my headaches are on the 2-3 level.  I don’t complain until it hits a 5, and only then because I know it will be getting worse.  At a 5 I will often take something, but I need to be careful, I can’t take something if I’ve taken something for too many days in a row, this will cause rebound headaches.  I never want to have rebound headaches!  Before I knew about rebound headaches I took too much medication.  I hurt, I took something, that’s the way it works right?  But you can get to the point where your body says, OK, it’s time for you to hurt so I can have that pain medication.  It’s strange.  I know I’m not giving sound medical rationale about this, but that’s the way I think of it.

I’ve been told that today is a very beautiful day, with temperatures close to 80 degrees F.  The sun is shining and the flowers are starting to bloom, a great day to take out the VW Bug convertible (that I got a few years ago, and now I can’t drive…but I still enjoy it).   Instead of having a lovely day out with my husband, I’m closed up in my bedroom (I literally haven’t left this room in a week, or more.   I’ve had so many migraines and vertigo taking the stairs is just too risky.)

I’m only able to write this in small increments with my computer screen dimmed as far as it can go without being black.

Why is the Botox not working?  I have no idea.  It normally takes a week for it to kick in, but it’s been over a week.  I hope this doesn’t mean that this treatment has stopped working for me.  I’m not sure what we’d do next.

Days like this…well the week like I’ve had, makes me feel so useless and..oh I don’t know how to say it, I feel like I’m just alive, but I’m not living.  Understand?

If you have times like this, what do you do?  How do you start to feel useful again?  I feel it’s been so long since I’ve really been useful.  So many people wish they could just lie around in bed all day, never having to do housework, always having someone to wait on them…..but I tell you, it’s not really what they want.  Living like this is torture.  I want to be able to cook and clean.  Work in my studio.  Have a Garden.  But, it’s just too much on this body and mind of mine.  I say figure out something small, but I’m out of suggestions.  If I didn’t have this blog, and the blogs I follow….my friends in my computer, I would feel completely worthless.  Thank you all for giving me that gift.

I apologize that the pain is talking so much today.  May tomorrow be a more pain-free and steady day.

What is going on???

Did we buy a house built on a burial ground?  Are we to be cursed forever?  I can have positive thoughts and depression in the same day…..yes I am feeling the bipolar bug a biting.

I wanted to write a memorial anniversary post about Sandy on the 18th, but I was losing consciousness at the headache pain neurologist office because I had such a migraine.  I couldn’t even wear my hearing technology, I went in deaf, because sounds hurt so much.  I had my sunglasses on and a hat to block out as much light as I could.  Stuart took care of everything.  I passed out twice, once I didn’t know where I was when I came to….and it had only been seconds.  I could barely talk, and I can’t even hear my own voice.

It’s those days that make it hard to find the positive.  And to top it off……

Stuart got laid off the day before.  Out of the blue.  Company got some new investors and started restructuring….’nuf said.

I probably have a ton more to say, I have hit some posts here and there….I’m sorry.  I still have 400 emails in my inbox.  If you have emailed me…I promise I’ll get to it….or resend it please…who knows what is lost in that pile.

My head is hurting so much.

I must get off the computer.  I’m not on here every day. I hope after getting back on Botox on the 7th, it will get better…may take a couple of months of treatments.

thank you all of sending healing thoughts my way.  I send out health and wellness thoughts to you all each night.  I breathe in your pain and out healthy thoughts.

(oh and don’t worry about the Bipolar Bug…I’m seeing both types of exterminations soon…yes I know it can’t be killed, but they can get it more under control.  I don’t want to feel like I’m just waiting to die.  But days like my trip to the neurologist, I feel like that….or I did.  I’m so confused about feelings right now and I know not to trust them.  Also hormonal time…so my emotions are being toyed with…as long as I know this, I can handle it.)

(I wanted a cool graphic for this, but just didn’t feel like drawing….in too much pain.)

Thank you to all who have commented here and I haven’t been to your blog, or at least not very often….I care more than I can say.

 

Being Sick when you are Chronically Ill

sickduckI’m sure it’s not the same for everyone who has a chronic illness, but for me, being sick on top of it is very hard to deal with.

First when you get sick, you often have to distinguish if your symptoms might be from part of your chronic illness or illnesses.  That can be very difficult sometimes.  I often feel like I’m catching a cold but it goes away in a few days, so for those few days I don’t know if I’m really “sick” on top of things or not.  I also have a lot of gastrointestinal issues due to food allergies and intolerances, it’s really hard to know if I have caught a bug or if I simply got a hold of something I shouldn’t have eaten.  This can be very disturbing sometimes, and it can make me less likely to seek medical attention for things until it has been going on for a while.

(a lot of this post is a recap of what has been happening with me the past few months.  Please feel free to skip this narration, I felt I needed a place to put it all in one place.  The major points I want to make are in bold at the bottom.  thanks for understanding…and if you read everything, you are an amazing person.  *smiles*   It took me three days to write this, between feeling icky and having a vertigo spell….so please forgive any errors…grammar, punctuation, spelling, even train of thought…yes brain fog is heavy these days.  thank you my dear friends.)

 

I’ve written about how sick I’ve been over the last few months….I mean really sick, on top of my chronic conditions…what a mess.  But I’d like to give you a run down of what happened and how I think I really goofed up and made this hang on longer than it had to.

The third week of October both Stuart and I caught colds, it delayed our leaving for Tucson by a week.  At the end of the cold I had this nagging cough hanging on, I’d heard from many people who live near us that they too had been suffering from colds that seemed to hang on for weeks with a cough, so I wasn’t so worried.  We started our trek across country, my breathing got worse, especially when we’d stop for the night.  I assumed I was having a lot of allergies erupting on top of everything.  Often our hotel rooms had a perfume smell, air fresheners, and one smelled like someone broke a bottle of cologne in the bathroom (we did ask to move from that room, but there was a convention in town and no more rooms were available).  We would have researched and found more allergy free accommodations for me, but those places would not allow cats, and Max needed a place too.  We do however always make sure we have a no-smoking room.

By the time we got to Tucson I was having a very hard time with the cough and breathing issues, but again, thought it was more allergies.  I felt that most of the stuff was coming from my nose…but I was wrong, that was only part of it.  Soon after we got here I started having severe vertigo attacks…Meniere’s was not kind to me.  I know the trip took a lot out of me,and I hadn’t been watching my salt intake as much as I should have..so I just thought my one of my chronic illnesses was in acute mode.  I still didn’t think I was really sick, sick.  (big mistake)  In the back of my head I knew I should go to the doctor for the cough, but I was so busy going to the doctor about my ears….and the holidays were upon us, it’s pretty hard to get in to a doctor as a new patient that time of year…so I thought I’d wait.  (again, not a good idea)  I continued to get sicker, no energy, coughing more, not being able to take a deep breath…..ect.  I did not get to enjoy one bit of the holidays (oh how I wanted a family holiday gathering, but I spent all of it in bed).  Finally, I told Stuart to, “Yes, please call and see if you can get me in to see a doctor.”  (he’d asked many times before and I said no, really I thought it was allergies, ragweed was in full bloom here when we got here, and the house we are staying in had been empty for a long time so lot’s of dust…I didn’t think the doctor would be able to do much more than I was.  Yes, I know…silly girl treating herself, but every spring I have severe allergies at home and I’m put on Flonaze, and 2 antihistamines.  So I did that, I was also taking an expectorant to break up the mucus and get it out….really all good things, and the doctor agreed, but I needed more.  And the Flonaze was causing me to have miserable nose bleeds. so that stopped.)

First trip to the doctor, (don’t you love a first trip to a new doctor, explaining all the reasons for your medications, all the things you have going on….ugh!  She actually said I was a very happy person for having so much going on with me.  I thought, well I could show the sad, depressed side of chronic illness all the time, but who would that help?  I may be ill, but I’m still a good person.)  I found out my minor Asthma (I haven’t had but a few attacks in the past 20 years or more, and only when I’ve been around strong allergens or perfumes.) has turned out to be pretty serious.  And I have Bronchitis…the Asthma probably got so bad because of the Bronchitis….and allergens.  So antibiotics, and a steroid….call in 10 days if not all better.  Stuart called after about 7 days because I was worse.  Ironic thing…my doctor had just gotten out of the hospital with pneumonia.  Actually scared me a bit, what if I had pneumonia…many of the symptoms were there, even the cold chills.  But then I laughed at myself…I had the pneumonia vaccine in May, I had to have it before I could get my Cochlear Implant. (that’s what I get for trying to diagnose myself with just the internet.  We can get some clues from there, but I’ve learned never to think it’s absolutely true for me.  Always consult a professional, or two.)  So I saw my doctor again on the 21st, 2 weeks from the first appointment.  Still not breathing well…ect, and my sinuses really hurt.  Diagnosis?  Still Asthma is going crazy, now bronchitis is considered chronic, and I have a sinus infection.   I was given a stronger antibiotic, prednisone (oh joy, more steroids), and I had a breathing treatment in the office with a nebulizer, for the first time in months I could breath, it lasted for hours, I was thrilled.  I was told if the cough was not much, much better in 3 days to call back and I would get a nebulizer for home.  But that night I started coughing so hard I pulled a muscle in my back.  I couldn’t walk without being in severe pain, putting weight on my left leg was almost intolerable.  Thank goodness for my walker, but darn the fact that I haven’t found a bathroom door that my walker will fit through!  So, I could get from the bed to the bathroom, then hobble inside.  What a mess.  I didn’t sleep that night, stayed on heat and ice, and luckily the next day it was much better.  I still rested with ice and heat to insure it got even better, but I could walk with minor discomfort.

So…yesterday Stuart called the doctor’s office…after 3 days, to tell them I need a nebulizer.  (really, I can get a nebulizer, I need the medicine that goes in it)  Unfortunately, they close early on Friday, and didn’t get the prescription called in before the end of the day…so I have to wait until Monday.

Another thing that I’m having trouble with.  Migraines!  Did you guess?   I had very good results from the Botox injections, but they have worn off…I am looking forward to March 7th, when I can see my neurologist at home and have the injections again.  (deep sigh)  I’m having a hard time with pain medication.  I was taking Hydrocodone, but it started making me itch, I’m allergic to Codeine (at least I’m told I am, I had the allergic reaction when I was pretty young, I don’t remember, but why would it be wrong?), Oxycodone makes me stop urinating, I’m allergic to Celebrex (I know this one is right, I have the ER trips to prove it.), and all NSAIDS hurt my stomach (thanks to an old doctor who had me taking Ibuprofen by the handfuls).  Before I left N.C. my neurologist put me on Tramadol (Ultram), well it makes me itch too!  So I’m stuck without a pain reliever stronger than Tylenol.  It’s been rough.  (I do still have other migraine meds, but sometimes you need a pain reliever…when I pulled that muscle it would have come in very handy!)

This post has become MUCH longer than I’d planned. I needed to put all of this in one place, and I wanted to make a point…but I think my point may have gotten lost.  Here’s the summary of what I’d like for you to take from this post:

  • When you are Chronically Ill, you need to pay close attention when you get sick.  Do not assume it’s your “normal” ill feelings.
  • Do not put off going to the doctor, if you don’t have anything worse than a cold, what did it hurt? (Yeah, our doctors may think we come in too often, but really if our doctor thinks that we should probably find a new doctor.)  I’m sure we often feel we go to the doctor too much, but don’t play around with your health.  Don’t be scared because if you are out of town and not close to your doctor.  Who knows a fresh pair of eyes may be helpful in many ways.
  • Often when you have a Chronic Illness you have less resistance to fight off sicknesses, like the “common” cold, than healthy people.  I know my body works over time just to take care of me with my chronic illnesses, throw in getting sick and there just isn’t enough resistance in me to put up a good fight.  I should have known better, and gone to the doctor sooner.

So the biggest point I want to make.  Know your body.  Know how you feel on a day-to-day basis, if you get sick, pay very close attention and take care of you.  You are the only one who can say if you need to see a doctor.  But don’t be like me, please see a doctor before things escalate into a more serious sickness.

I know I will always listen closer to my body than I have the past few months.  Just because there are other things going on in my life doesn’t mean my symptoms aren’t something I should pay attention to!!

 

Not Just for Wrinkles….

Botox is now used to treat migraines.  I know you saw me post that I was getting my shots on October 3rd….and I did…more in a moment.  However, isn’t it amazing that Botox will help migraines?  Or at least I hope it will.  I’ve been reading about it, and it seems to, I know someone who has been getting the shots for a while now and she has had wonderful results.

Botox is for people who have tried many other treatments but still have 15 or more migraines a month.  In trials it prevented about 9 of those headaches.  Having half as many migraines as i do now would be amazing.  However, I also read that people who took the placebo reported having 7 fewer migraines a month….a difference of 2…not so great.

There are a number of side effects you could have, but I haven’t noticed anything.  On the Allergan site (they make Botox, I found that funny since they are known for contact lens stuff) it says, “It may take several weeks to see a response. In clinical trials, patients showed a response at their 4-week evaluation. After 2 treatments (at 24 weeks), BOTOX® was proven to reduce headache days each month.”  I was told by my doctor (and I know others have been told this too by their doctors) that you will notice a difference in 4-7 days, normally about a week.  I hope the doc’s right, I’m ready for relief. Also, considering I won’t be able to get my second injection for about 5 months I might have waited until then for my first treatment if it takes 2 treatments to be proven to reduce the number of headaches each month.   (We will be in Tucson, AZ for the winter, so I can’t get my next injection until March 7th).

I’ll keep you updated on how my headaches are doing.  Allison, from Taking Life for a Spin, recently had her first treatment and after about a week she reported she couldn’t lift her eyelids.  You can check out her story here: Unresponsive Eyebrows.

So, how did the treatment feel you ask…what exactly did they do???

I had 31 injections….here are photos from the Allergan site showing the injection sites.  One of mine was a bit different, Cochlear Implant in the way.

Forehead injection sites
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites sides.
This was a bit different on my left side due to my CI.
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
injection sites Occipital
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites back of head and shoulders
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/

What did it feel like?  My doctor told me it would feel like little bee stings.  Well I’ve only had big bee stings so it was much less painful that I thought it would be.  The needles are tiny, but the solution does sting a bit, and some of these areas were pretty sensitive on me, but it wasn’t bad.  I’d do it again.  : )   It went really quick, my doctor really knew what she was doing, just a few minutes and it was done.  I spent much more time waiting on her to come in the room.  : )

So like little bee stings, yeah, but remember I got stuck by the whole hive!  hahaha.  No…I promise it wasn’t bad at all, it was nothing like some of the other procedures I’ve had!!

After I got the Botox injections, I also got an injection for the migraine I had right then.  (one that had been going on for nearly 2 weeks)  So after my visit we got a bite to eat and I came home and slept for 6 hours!  What a way to spend the day…a good way actually.  The shot in the butt helped my head pain, and he shots in my head will hopefully help me to have less head pain, and I had a good 6 hours of sleep straight through.  I did feel like I wasted the day, then I thought, “What else would I have done?”

Oh….I forgot the funny part of the story! But beware…this is Way Too Much Information!

I had been having cramps and all the symptoms of having a period, with no period, for over a week.  That morning I woke up and felt fine, I thought….hmmm, guess I’m not having a period this month.  (I am 49, I’m expecting to start skipping some periods)  So I got dressed, and left for the doctor’s, we get half way there and I’m hit with a horrible cramp.  I thought….no, no, no…I didn’t bring a thing.   Of course, when we got to the office I go to the rest room and yep, I started.  Well, If you are a woman, I’m sure you’ve all had this happen at some point in your life, and what do you do?  No dispenser on the wall….so…Toilet Paper to the rescue…and pray it’s good enough for the time being.  So I went and waited and waited for the doctor, and had all my shots and 2 hours later we were leaving…and I forgot, yes, I forgot about my makeshift protection.  So we go out to eat lunch, and go home and I walk in the door and remembered.  How could I have forgotten?….well the shot could have had something to do with it, but, but, ewwww.  Luckily, it wasn’t that bad.  But I will never again assume I’m not having a period!!   Lesson learned!

Day 23

*first….I’m having trouble with my blog, I’ve written WordPress but don’t know what’s going on yet.  I cannot post any images or tags.  Sorry*

Last night I started on Diamox, per doctor Gray’s instructions.  Still talking a little Topamax, I have to wean off of it.

I admit I still wasn’t feeling great in the evening, well I haven’t felt “great” for a long time, but I wasn’t feeling good.  We decided to watch some things on Netflix because I was afraid to go to sleep.  First we watched Donkey X, a silly animated movie about Don Quiote and Sancho as told by Sancho’s Donkey….OK…that’s the very short synopsis, but really that’s not why you are reading this post is it?  Then we watched a number of old Dr. Who’s – the old one’s with Baker…if you are a geek/nerd type then you know Baker is the Doctor who had the very long scarf and the curly hair.  (perhaps the most famous Doctor of all – unless you are under 20, then it would be David Tennet) – again, not why you are reading this post huh?

Finally, I decided to try to sleep.  I have found I feel a bit better if I’m not lying flat.  So I propped myself up a bit and I do believe I was asleep before my eyes were shut!  I woke up about 4 1/2 hours later with a headache in about the 4 range.  A 4!  OK, for those of you who don’t realize what I’ve been going through (here is where I really wish I could post photos), I have been in the 7-9 range for days.  Occasionally hitting a 6, and if I hit a 5 I was pretty doped up!   I was so happy.  I thought, “Yes, this is going to work!”  Then I thought, “Well, this means I definitely have high pressure.”  You see, if I didn’t have high CSF (cerebrospinal fluid pressure) this drug would have made me feel much worse, so I took a great risk taking it, but I was willing to try ANYTHING!

I decided, to try a little experiment and lower my head a bit, I woke up at about 9:30am, and my headache had climbed to about a 6, I should have taken a pain pill, but didn’t want to do that on an empty stomach.  Unfortunately, I didn’t trust myself to go downstairs to get anything, and Stuart was too exhausted to get up yet.  So I went back to sleep.  When we woke again, my head was back to an 8.  Stuart made me some breakfast.  I ate, took my morning medications.  Including the Diamox and the little bit of Topamax.  Shortly afterward the world started to spin.  Luckily, if I stayed very still on my right side it was almost still.  So I dozed.  But if I tried to move it went crazy again!  (and oh how I had to go to the bathroom! Isn’t that always the way?)  This last over 2 hours.

My headache has been around 7 -8 most of the day unless I took a Maxalt or Hydrocodone, then it would ease to a 4 or 5.  But I feel much more dopey when I take those than I used to.  I wonder if they Diamox makes them more potent, or if it’s just because I’m sleep deprived.  Unfortunately, often when I try to sleep I start to spin.  That just happened a little while ago.  I gave up and decided to update all of you.

All and all, I take last night as a good sign.  Perhaps we can get this medication worked out and I can at least get things under control enough so I can get out of bed!  It’s horrible.  I have 2 people living in my house and I haven’t seen them in days.  I’m still lonely.  It’s sad really.  But it’s hard.  People don’t want to intrude when I’m like this.  I admit I don’t like for people to see me when I’m having a vertigo attack, or in horrible pain…but I am lonely.  Thankfully, I do have Stuart, and he tries so hard to keep me entertained.  : )

I’m not crazy about being on Diamox.  The side effects aren’t fun.  Well, two in particular.  One is this tingling sensation.  Kind of like when your hand or foot starts to go to sleep, but not quite..and it’s just an icky feeling.  The other is brain fog.  Often very intense brain fog.  So we’ll have to see if I can deal with that.

I will say, either the Topamax or the Diamox  (these two drugs are in the same class) is already reducing my appetite.  Thank goodness, I needed that!  I weighed in at the doctor’s on Wednesday at 200.9 lbs.  I NEVER thought I’d ever see 200lbs.  I’m only 5′ 4 1/2″.  I do realize it was the day before I started my period, and I was fully clothed in jeans and tennis shoes, but that should only take away about 5lbs.  I was happy today to feel like my appetite was much more back to normal.  Ever since I started having trouble with this fructose intolerance I’ve been so hungry.  Having cravings I just couldn’t satisfy.  Top that off with not being able to exercise.  I gained about 55 lbs.  Now it’s time to take that off!

Anyone out there want a weight loss buddy?  As soon as I can do any exercise at all I will be easing into something slowly.  Stuart surprised me, he’s looking into getting a therapeutic pool.  I don’t think we can afford it.  But it sure would be nice.  First things first, I need to get this vertigo under control first.  Can’t be getting in water when I can’t see straight.  : )

OK, as you can tell, I am sleep deprived and just rambling.

with no photos…my posts are a bit boring huh?

I leave you with this…..

Draw the Shades Today
Migraine Pain Robs One of light
New Meds Can Give Hope