Tag: Headaches

Gratitudes 3 – A Pretty Darn Good Week!

On By WendyIn Chronic Illness, Gratitude16 Comments
by w. holcombe
by w. holcombe

Things haven’t been perfect this week.  I did have a night filled with cluster headaches.  But I got through it, and since then I’ve been feeling, well, pretty darn good.  Until I got this little virus, but I already wrote about that, and I’m grateful that it will run it’s course and I’ll be done with it!  Plus I’m very Grateful that it really hasn’t been that bad, a couple of icky days, but that’s about it.

I am so very GRATEFUL that I found something that is helping me with my tummy issues!  I found a book that addresses the food issues that I have, but I plan to write a whole post about this, it’s so exciting! And I think it could help others with dietary issues.

I am GRATEFUL:

  • that I have a new psychiatrist!  She is so professional.  I’ve only seen her once, but she took a very detailed patient history, discussed all my medications in detail, discussed my concerns, and our future plans.  I was very impressed.  After the last fiasco with my previous doctor, it is such a relief to find a doctor who is not only professional but enjoys her job.
  • that I have been on more regular sleep schedule.  This is something I haven’t had for a very long time.
  • I am waking up with more energy.  Of course, this is probably because I am on a more regular sleep schedule, but it sure is nice.
  • I’ve been able to go down stairs every day this week. Most people probably don’t know just how disabled I have been, but tackling the stairs have been a huge task for a long time.  Most weeks I’ve been lucky if I’ve made it downstairs one or two days.  So making it down stairs every day for a week, that is a great accomplishment!
  • I have gotten out of the house many times this week!  Not only have I made it downstairs every day, but many days I’ve gone out.  I went to the grocery store….a HUGE accomplishment!  I went for a ride with the top off of the car!  I went to the Thrift store and got a new pair of pants.  I went and looked at glasses.  (I have an eye doctor’s appointment tomorrow, and will need new glasses.)  I even went out to eat, this is hard because of all the noise.  I’m also proud I went out to eat and stayed true to my diet, I didn’t eat anything that would make my tummy unhappy.
  • yoga pose 1yoga pose 2I exercised a little this week….a very, very little…but I did something!  Not only did I do a lot more in general, and you can call that a lot more exercise…I know my body is!  I did a few yoga poses almost every morning.  Just a few.  I’m trying to learn to balance more with my eyes instead of relying on my ears so much.  So I’m doing some of the standing yoga poses while focusing on a focal point.  Maybe it will help.   By going out an doing more I’m also working on increasing my stamina.
  • I didn’t let a virus ruin my week.  I was having a really great week, then I caught a virus and suddenly I felt crappy.  I thought, am I going to start feeling really bad again?  Then I caught myself….Stop thinking like that.  I can’t predict the future.  And what has been happening has been great, but it doesn’t mean it will continue.  I  will live in this moment.  and I’ll enjoy it.  If it’s a bad moment, I know it’s a moment.  It’s my moment.  And it’s OK.  (A note to Laurie at HibernationNow….Yes, I did over do it…You were right!  so I’m very tired today…but it was worth it, yesterday I had a a very fun day!)
  • I realized that even having a virus I still don’t feel as bad as I have felt.  No I don’t want to live in the past, but it was a bit of an eye opener when I realized I was lying here sick and I didn’t feel as bad as I have for a lot of the time this past year….heck the past couple of years.
  • My head hasn’t hurt much at all!  As I mentioned above, I had a night of cluster headaches, but since then….my head has been so good to me.  There’s a couple of reasons I think this may be, but I’m just grateful that it has happened!  I’m sure I’ll have headaches in the future, but to have the relief I feel now….so GRATEFUL.
  • I made my lunch today all by myself.  I cut up my own chicken today, and warmed up my own lunch.  Because of my balance issues and sudden vertigo I haven’t trusted myself to use a knife in a long time, at least without supervision.  Today I made my lunch with Stuart upstairs.
  • To hear my husband say, “It’s so nice to be able to do things with you.”   Remembering to be in this moment…..

My Head Hurts

On By WendyIn Chronic Illness, Headaches12 Comments
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

 

The hardest thing to hear….”There’s nothing more we can do.”

On By WendyIn Chronic Illness, Meniere's Disease19 Comments

I haven’t been posting on a very regular basis because I’ve been having daily vertigo.  Sometimes it’s a short bout of spinning that I can handle pretty well, other times it has been the horrific bouts that cause me to throw up for hours, and lose all bodily functions.  (I know you’ve heard the details before, I’m sorry for the graphic description)

Daily vertigo is so draining.  The constant disequilibrium is one thing, but the vertigo…it’s the most debilitating thing that has ever happened to me.  To have this just hit me out of the blue, leaves me with such fear.  This past week I’ve woken up with vertigo at least 3 times.  One time I was on the verge of throwing up, and I admit, I completely freaked out.  That bothers me so much.  I have been keeping my cool through the attacks, but then that happened, and I’m terrified.  How can I feel comfortable ever leaving the house when I know that daily I have these attacks?

We can’t be sure if the vertigo is being caused solely from Meniere’s, I also get vertigo from the Idiopathic Intracranial Hypertension (IIH), and Migraines.  I saw my otologist (ear doc) yesterday and told him everything that has been going on…..he was so distraught.  There was another doctor in the room with him from Turkey, and both agreed, there is nothing that can be done.

Some people have said I could kill the balance nerves, but that is not an option for me.  For a number of reasons.  At my age, it’s almost impossible to learn to balance with just your eyes…and when they say that you balance with your “just” eyes that’s not really right, you use the balancing nature of your muscles, bones, ect.  It’s easier to do this at a young age, children can often overcome the loss of balance from the ears.  But this 50 year old woman who has been using her ears to help balance for her whole life, and who has trouble with her hips and pelvis so her gait is off, well I would almost definitely end up bed bound having vertigo constantly. I’ve never been so overcome with emotion.  I just cried, I had a very hard time composing myself.  My doctor looked so tortured and kept saying he was sorry.  I told him he didn’t cause my ears to be like this, but I know he wants to help.  It hurt him so much to tell me he just couldn’t help.  He told me if he finds out anything that might help he will call me immediately.  I know how much he cares, and it pains me that my illnesses has made him feel useless.

I feel odd today.  I’ve felt so defeated and depressed lately.  It’s simple, I just didn’t feel I could continue to exist like this.  When you feel your life is only just existing, and that existence is completely miserable, then why are you existing at all.

Today, after learning there really isn’t anything medical that can be done, I actually feel like a weight has been a bit lifted.  I know I have to deal with this, I can’t just keep thinking that there must be something that can be done.  I’ve come such a long way in dealing with my vertigo attacks.  Often, I can stop them from getting to the most horrific stage.  It’s difficult, and it’s challenging, but it’s helpful.  I’m still stuck being very still, not allowing myself to look beyond an article just in front of me (if I focus further away I will spin harder), trying to stay calm, taking deep breaths, and telling myself over and over that it IS NOT REAL.  Of course, getting the meds in me as fast as possible has helped a lot too.  So now I know what I have to deal with.

Just-relax-and-stop-stressing-so-much

I know stress is making things worse and my normal exercises that I have come to rely on to reduce stress is not working, so I have to do some research and try something new.  I’m thinking about hypnosis, after we have income coming in.  I have a focus now….what can I do to reduce my stress? The stress of:

  • my husband being out of work since April 2013, and me not being able to work.
  • having my disability denied and now that we are in the appeal process they are saying it will take over a year before my case will even be heard.
  • my father just started treatment for liver cancer
  • the continued asthmatic symptoms without being able to get much relief.
  • an increase of migraines….is Botox no longer working, or are the migraines being caused by the IIH
  • an increase of IIH symptoms
  • breaking my foot
  • not feeling stable at all.  Not knowing where we may end up, not knowing what is going to happen…this is not good for me.  I do not do well when I feel like my life is up in the air.
  • not being able to be intimate with my husband…and yes, even with everything that is going on with me, I would like that part of my life back.
  • ……….that’s enough to list isn’t it?  yet, yes I can think of more.   (Deep Breath!!  In…Out…repeat)  OK, that’s a little better.

How do you handle stress?  Any suggestions.  I’ve done a couple of things, but more needs to be done.  My stomach hurts all the time….this cycle has to be broken.

Thank You Santa!!

On By WendyIn Chronic Illness, Headaches10 Comments
Miracle on 34th Street drawing. at deviantArt.com
Miracle on 34th Street drawing. at deviantArt.com

I got the best gift on Christmas morning.  It wasn’t under the tree (that would be pretty hard since we didn’t have one…but it wouldn’t have fit anyway).  It wasn’t wrapped.  I couldn’t touch it.  But it was the BEST present I have ever received!!

When I woke up Christmas day I didn’t have a headache!!!  Not at all!!!  I can’t recall waking up without a headache since I was 11 years old.  I have chronic daily headaches.  I always have a headache that ranks about a 2-3, then it’s much more if it’s a pressure headache or migraine.  Normally, I wake up with about a 6 or more because of the Idiopathic Intracranial Hypertension.  Lying down all night, even with my bed on an incline, the pressure just builds.  There have been many days I’ve said, “Oh how I wish I could just wake up without a headache, just one day.”

Merry Christmas to me, I got my wish!!!   I woke up with NO headache.  Most of the day was headache free.  It did return that evening, but those hours headache free were magical!  Waking up headache free was simply miraculous!

I do believe in the magic of Christmas!

Thank you Santa!  I hope you can get around to giving out a few of the things I asked for on my Christmas List.

I feel like a little girl.

A little update….

On By WendyIn Asthma, Chronic Illness12 Comments

I wanted to let you all know I’m OK, I know I haven’t been around for a while.

I have had some challenges – emotional, physical, and mental.

Wendy - photo manipulated by W. Holcombe
Wendy – photo manipulated by W. Holcombe

First, the trip to Las Vegas, was postponed and we have no idea if it will be rescheduled. This doesn’t give me a good feeling about the company, and that’s sad, because I think Stuart would have liked that job, and we could have saved a lot of money living there. But hubby has had other interviews since then, and it looks like he will have multiple offers…I’m just not sure if he will be happy at these jobs, but right now we don’t have the luxury of him being able to be that picky, and that worries me. We also won’t be able to save as much money as we would have at the job in Las Vegas. (about the same salaries, but in places where the cost of living is higher)

The week of Thanksgiving my father was diagnosed with liver cancer. He has been sent to many

My Father (he's a bit thinner now)
My Father (he’s a bit thinner now)

doctors for many tests, and still he must have more test to determine if the cancer has spread. If it hasn’t the cancer may be operable. It appears to be contained at the moment. I feel guilty I can’t help, and I feel guilty that I would be afraid to help if I was able. I took care of my mother when she had cancer, it was the most difficult thing I’ve done, and the most rewarding. But my mother and I were very close, my father and I have always had a strained relationship. Don’t get me wrong, I love him, we simply have different outlooks on things, and I don’t see him being the easiest person to care for. I feel like that makes me such a bad person. However, I also know, if I was able, I would swallow my fears and help in any way I could. Right now I am hoping he is not in pain, and will not have to go through the horrors of advanced cancer. His birthday is tomorrow, he will be 81. I don’t think he looks it. My father has a full head of the most beautiful white hair. Well enough about that for now. I’ll know more soon.

My asthma has been acting up horribly. I start coughing and wheezing with just the tiniest bit of exertion, and just forget about laughing, that will send me into an asthma attack faster than anything. I almost had to have an emergency visit because of it, but a double treatment with the nebulizer calmed things down. I was doing better for a while, but it’s sad to think that I have coughed every day for over a year. I have also been having sinus drainage, this has not helped the cough, and sore throat (from coughing), but I can tell the difference in the cough. The production is different…let’s just leave it at that. My whole body hurts from coughing.

I haven’t been able to make it to the audiologist to have my CI adjusted, so people are still sounding a bit like they have huffed helium. I’m getting awful sound headaches after wearing my CI’s for just a short amount of time if there is more than one noise in the room. (like the TV and Stuart talking). But I’m pleased to say, I’m still hearing more music than I have in years!!

I’m having some pretty bad headaches/migraines lately. I’m not sure the Botox really helped much this go around, and that makes me pretty darn sad. However, I think a lot of it is my Intracranial Hypertension. I wake up with a horrendous headache almost every morning. Another major trigger, is a deviation in sleep pattern, and I can tell you, my sleep pattern simply doesn’t exist! I am not sleeping well. Some days it’s because I cough all night. Some days I don’t know what it is. The other night I felt like things were biting me….like little no-see-ums. I drove me crazy. So sleep is erratic, and that’s a major trigger for my migraines and vertigo. Yes, that’s acting up too. I keep feeling like I’m on a boat, not a great feeling.

I’ve noticed I have pretty severe social anxiety. I do not want to go anywhere. I don’t want to be around people, especially people I knew before all this started and I haven’t seen much of them (if I’ve seen them at all) since then. I don’t want people to see that I’ve gained so much weight. I don’t want to be in a situation where I’m lost because I can’t hear. I’m terrified to have an attack in front of people. I feel I have so many phobias now I live in fear. The only places I’ve been since we have returned from Tucson is to the doctors, and to a couple of restaurants (this took a lot of courage for me, and we had to go on off times so the restaurant would not be crowded). Every time we go out, even to the doctor’s offices, I get so worked up I have to come home and rest. (all my spoons are gone!)
I don’t feel like anyone understands me. I wish I had some local friends with chronic illnesses that felt well enough to visit. I think part of this started because I can no longer drive, so I can’t go anywhere by myself, this puts me in the mind set that I shouldn’t be out. Or maybe I’m just trying to justify the phobias a bit more. It’s not good to be isolated, I know, but I’m really scared, and often I get so sick before going out that I simply can’t go. You can’t imagine how many doctor appointments I’ve had to reschedule.

On the other hand, there are days I think I can do things I used to do, so I try…and usually fail miserably. This doesn’t help my self confidence about going out.

I think the title of this blog post is wrong. This turned out to be much more than a little update, and I’m cutting it short!

I’ll be back soon. I have much to share. Plus photos of my new CI’s.

What’s up and on my mind…a Free Write…

On By WendyIn Chronic Illness16 Comments

Please note…I’m just going to write and not pay too much attention to grammar or spelling or anything like that, I’m not going to re-read because I don’t want to filter what comes out.  This is an experiment, something I sometimes do in my journal….let’s see what comes to the surface….

Acceptance is not the same as giving up, but if I’m not careful it can slip into that.  I’ve accepted my illnesses, especially Meniere’s with hearing loss, for a long while now, and I’m really ok with it.  I realize things aren’t going to get much better, and my not get any better….now is that giving up?  not saying I’m OK with it, but saying it won’t get better?  When my husband was worried because I had been feeling worse for a while he wanted me to think about going to the doctor and he said, “I just want you to get better.”  I got so mad and upset.  What?  Get better?  What delusional state are you living in?  Do you really think I’m going to get better???  I felt like he didn’t understand….then I realized…after a long discussion that he meant he wanted me to feel better than I had been for the past month, he felt something new was wrong and wanted me to check it out.  Then I thought….could I get better?  Have I given up?  and decided, yes, to a certain extent I had given up.  I was so determined to accept my life as it was, I had given up that it could be better.  Maybe the hearing can’t get better….well, the doctor has told me that much.  And possible the vertigo will never get better….but who knows for sure, I accepted my fate.  I’ve also accepted living in pain.  Hip pain, pelvic pain, Vaginismus, neck pain, arthritis pain….and my other illnesses….I accepted my fate, I’d live with these forever, but really, do I have to?  Yes, I’ve put these issues on the back burner because the Meniere’s, Hearing loss, and Migraines have taken over my life, but as I’ve found that my Migraines can get  better, I can hear better (thanks to the computers in my head) maybe not the same or as well as i once heard, but I can hear….why should I not believe some of my other issues can be helped.  No, I’d given up.  I’d given up on having a normal sex life, given up on being able to walk for any distance without being in horrible pain, given up on so much….  I feel better that I’ve accepted the things I cannot change, but I’m ticked off at myself for giving up on the things I could.  This has changed!!  I’m not giving up on getting better…the things that can get better….I’m not giving up on me.

I had a realization the other night.  I’ve been having full blown panic attacks lately…yes, feeling like I can’t breathe, my chest tightening….everything.  I realize most of these have been triggered by the loss of income in the family, then me being denied my disability claim, and I’m still mourning the loss of Sandy.  (yes, it’s been over a year and an half)  Losing a friend who was so close to me for 19 years has taken it’s toll on me.  I can honestly say I have not grieved for anyone more than Sandy except for my mother.  Maybe it’s because of everything else that has happened in the past couple of years, everything just building up on it…but I don’t think so…my Sandy girl was just so special.

I HEARD MUSIC!!  Yes, that’s right!  I actually heard music for the first time in at least 3 years!  Stuart was out of town for a job interview, and I was watching a movie, they started playing Credence Clearwater Revival’s Have You Ever Seen The Rain?  And I actually heard it!  I understood the words, I heard the music!!!  This new CI likes music.  I still can’t understand many spoken words on TV, but I heard music!  I didn’t realize I missed it so much.

http://www.youtube.com/watch?v=TS9_ipu9GKw

Well, I think that’s all for now.  I’ve been having a hard time keeping my CSF pressure stable, and today is a bad day.  My doctor raised my dosage, and I need to take my meds.  I also have to see a neuro-opthomologist.  (Yes another thing I had accepted, and felt like it wouldn’t get better, I know it won’t go away, but hopefully, it will get better)

My asthma symptoms were much better but not great, my doctor added another medication, and now I’m much worse.  Bah!  Hoping this will get better.

Oh, Stuart’s interview in Las Vegas went well.  We are going to go look around soon and then he will make a decision.  Lot’s to do…well, not as much as I thought, they said they will pay for the move.  : )  But selling the house when we aren’t here, that is a scary thing….at least to me.

Keep meaning to take pictures of my new Cochlear Implants…I want to take a photo of the new beside the old, so you can see the difference.  It’s amazing how much it changed in just one year….but I don’t think it will change that drastically again for a while.

More soon….thanks for putting up with my babbling.  AT least this has some coherent thoughts some of my journal free writing doesn’t.

What’s going on with me?

On By WendyIn Chronic Illness13 Comments

I know you are asking “What is going on with Wendy?”, she wrote a post about how much better she was feeling emotionally and then she just disappeared.  What? It wasn’t that long ago?  Wow, it feels as if so much time has passed since my last post!

So much has happened.  Last Thursday (I think that’s right, I’ve lost track of time) I had a bad asthma attack and was told by the doctor to come in NOW!, then when they saw me she said, if this happens again, go straight to the emergency room!  Asthma can be one bad mother! (pardon my words, but I was thinking worse…this whole thing with my asthma suddenly getting worse after so many years, well I’m just ticked off about it!)

Want to help someone with Asthma? Please do not wear perfume to the doctor's office. image by Ryan O'reilly at Deviant art
Want to help someone with Asthma? Please do not wear perfume to the doctor’s office.
image by Ryan O’reilly at Deviant art

The real kicker of the whole situation is that I wasn’t that bad at home when we called the doctor, I just hadn’t been able to sleep because of coughing all night.  Then on the way to the doctor we passed someone mowing grass, and I started to wheeze.  I could feel the left side just close up.  I used my inhaler…again….and again.  Stuart said, do you want to go to the Emergency Room, I said no.  Then shortly afterward I croaked out “E…R…”, but then the inhaler started to work and I could breathe again.  So we just went to my doctor’s office.  Unfortunately my doctor wasn’t there and I had to see someone else.  She doesn’t know me.  I do not get anxious when things like this happen. (I get more pissed than anything, I admit I did get a bit anxious when I thought I needed to go to the ER, I hate going there, but that ended as soon as I started to breathe again.)  I’ve had enough happen to me, I stay calm and make decisions on how to handle it.  She thought my “anxiety” was making it much worse, and she’s not the kind of doctor you can explain things like that to.  She would listen, but she would still think she was right.

I saw my doctor on Tuesday, and she agreed, I’m not likely to have anxiety about these things.  And we discussed what type of specialist I should go to, an allergist, a pulmonologist (lung doctor), or an ENT.  We decided on the ENT because I’m having a lot of drainage from my sinuses too.  We figured he may be able to fix that, and if he couldn’t help with the asthma, he could recommend someone in at Duke.  I know you are all thinking I already have an ENT because of my ear troubles, but my ear doc, is just that, he specializes in ears.  He’s an otologist, just ears.  However, we are getting a recommendation from him to see someone in his group.  She wrote me a prescription for a cough suppressant to take at night so I could get some sleep.  Unfortunately, it has high fructose corn syrup in it, not something I can take!  So she recommended Chlor-trimeton, an over the counter antihistamine that is very drying.  Finally, I have been able to sleep with minimal coughing during the night!  I was so sleep deprived I was loopy.

One day…about a week ago now, I fell.  This time I fell into the wall.  Not thinking it was a big deal, I didn’t even hit the floor, but I jammed my arm.  So typing is a bit difficult.  I have to put heat on it and stretch it and mainly just let it heal.  So I won’t be typing a whole lot…it’s hard to do with just the left hand.  I do sneak in there with the right hand, but then my arm aches for a long time.

Oops, I fell, again!  I went to the bathroom and started to spin (the vertigo has been back with a vengeance this past week!), I called out for Stuart but he didn’t hear me.  So I tried to get to the bed as quickly as I could.  I hate ending up on the hard bathroom floor when I’m spinning for hours.  I almost made it.  My walker was near the bed and I went to grab it, but missed (the handles weren’t where my eyes said they were), and I went down.  The front of me mostly landed on the bed, but my knees came down hard.  They hurt for a bit, much like when you fall when you’re a kid.  No biggie, but I’m tired of falling.

Image by Wendy Holcombe
Image by Wendy Holcombe

I’ve had 3 bad vertigo attacks this week!  This week!!!  Since my surgeries I’ve been averaging about 5 a year.  I will have little mini attacks more often, but I think they are more migraine related.  So THREE in one week is unheard of for me now.  But I have found something out about myself.  I don’t panic as much anymore.  (well I started to panic during the one yesterday, it has just been happening so often!  And this one just didn’t want to end.)  However, I’m happy to say, for the most part, I have remained calm.  I tell myself over and over, “it’s not real!”  I also stare at something close to me, often with one eye shut…it seems to help.  I will put my hand on that focal point (usually a cup) and tell myself, “you know your hand isn’t moving so the motion is not real, it will go away!”   I’m also very lucky that I now have Phenergan injections that Stuart can give me.  My migraine doctor wrote the prescription for it, and it has helped a lot.  I still get very nauseous, and some times I feel I might throw up (especially if I look away from my focal point that is close to me, seeing the room…the world…spin is much harder to deal with.) but for the most part I’m not throwing up as much during attacks, or during migraines….yay!  So to sum up, I’ve been having more attacks, but I’m proud I have been handling them better!

The attack last night was strange.  I’ve only had one other attack like it.  I had the spinning and then I just fell asleep.  I woke up a little over an hour later and the room was spinning.  That just isn’t fair!  I told Stuart, that’s against the rules.  When you have vertigo and it finally slows enough that you are just exhausted and pass out asleep, you are not supposed to wake up having vertigo.  At least it was slow moving…but it lasted over an hour longer.  That’s the part I didn’t handle very well.  It’s just against the rules!!

As you can see there’s been a lot going on, and I didn’t even mention it all.

Here’s the highlights….

  • Asthma is better, but not controlled.  Need to see specialist.
  • Meniere’s attacks have increased, but I’m handling them better.  (may be caused from lack of sleep due to asthma)
  • Migraines have been intense, but mostly short-lived.  Coughing raises my CSF pressure, so these types of headaches are expected.
  • Still need to go to cardiologist to find out about palpitations.  (that is rapid heart rate, right?)  I haven’t had this happen since March.  (I have an appointment with him on August 2nd.  Funny thing, it’s Dr. Gray’s husband….if you remember she’s my neuroradiologist who diagnosed me with Idiopathic Intracranial Hypertension.
  • Still waiting on insurance to approve second CI, but they wouldn’t operate on me right now anyway.  Not with uncontrolled asthma.
  • Stuart is still not working.  He is looking into going back to school for Medical Informatics.  (I told him he made up that word, but it’s real…I’m so behind the times.)  He would also be working, but things will be tight for a few years.

Under Pressure….CSF pressure Up – Down – who knows.

On By WendyIn CSF, Headaches13 Comments
The Headache, by Kamshubel (from DeviantArt.com
The Headache, by Kamshubel (from DeviantArt.com

In my last post I talked a bit about my headaches, and the Cerebral Spinal Fluid (CSF) being a bit out of control.   So let me give you a run down of how things have been going.  It will be pretty short, but at least I’m posting, right?

I had my Botox shots on April 7th, after about a week they started to really work.  My headaches lessened in both frequency and intensity.

Then I had the mishap with my medication on May 25th…or sometime around there.  I got all of that straight, and started taking my Diamox religiously.  I have a separate box just for it with 4 pills in each slot, then I can just look in and see how many I’ve taken at any given time.  All good there…at least I thought it was.

About this time I started my period and the weather went wild, storms every day, the humidity and barometric pressure all over the place – a perfect storm for a migraine.  For 2 weeks I had a horrible headache every day, sometimes my migraine meds worked, sometimes they didn’t.  The headaches kept changing intensity.  One moment I would be around an 8, it would drop to a 4, then back up again…all within minutes.  I was so confused.  Then one day about a week ago I realized my headache felt better if I was up, as soon as I lay down, BAM, the pain would assault me again.  This could only mean I had high pressure.  But I will admit I felt better than I had for a while, since I could get up and move around with relatively no pain.  I was still taking my medication exactly as prescribed.  The next day I awoke with very little pain, until I got up.  The world spun and suddenly I had a headache so bad I nearly blacked out.  Dang-it!  Low pressure again.  We are pretty sure I had a blow out, and my pressure dropped drastically.  So for the past week, I’ve been back on my back.  I need help walking to the bathroom.  Night before last I had an attack, it was different from most.  I did not have true vertigo, I constantly felt like I was going to, I had light vertigo for a while but mostly I only spun when I moved my head.  (Yes, it’s pretty hard to not move your head, especially since I had to go to the bathroom often during this time)  I was sooooo very nauseous.  I wanted to throw up just to make it stop.  I had spasms in my stomach like I was throwing up, but nothing came.  I could feel the gorge in my throat, but it didn’t come out.  This was very painful.  This went on for a little over 6 hours!  I took everything I could to try to stop it.  The nausea was so horrible.  I took the pills for it and suppositories.  Nothing was working.  And I would love to know why, when I have an attack (and I’ve heard others say this about Meniere’s attacks too) do I have to go to the bathroom so much?  My dear husband was so wonderful, but I kept getting so confused and I’d start to cry a little because I couldn’t understand him.  He was a dear about it all, and stayed up with me…he never left my side except to get me more ice.  (I forgot to mention, my Tinnitus has been going Crazy! So loud!  I had a piercing sound the other night and told Stuart my brain was having an Emergency Broadcast Signal!)

Now, I have super-duper headaches.  Today, it doesn’t seem to matter if I’m up or down, it still hurts.  My migraine meds are working a little.  (the Toradol shot did little to help, it’s usually magic in relieving my migraines).  I will see my headache pain specialist on Monday, hopefully this will be over by then, but I hope they can tell me what the heck has been going on!

On a better note: My asthma is much better.  I still have coughing fits, especially after I eat, but they are less frequent and less severe.  I’m so relieved about this.

My goal lately has been to laugh at least once a day.  Stuart’s a great help with that, he often makes me laugh….and Max is good for it too.  Right now he’s loving on my laptop so hard it’s about to fly off my lap.  It really is funny when he comes up to me when I don’t have my Cochlear Implant on and Meows at me.  I just see his little mouth open and close, no sound…Stuart says he does it often to me and I don’t even notice.  Poor Max. I promise he does get a lot of attention.  I think even more than I do!  haha

I’ve written numerous posts in my head, but haven’t been able to write them.  I have tried, but my brain gets confused or my head starts hurting too much.  I wrote one and tried to read it over and got so confused.  I am not reading this one, so forgive me if it repeats a lot, has a lot of grammar mistakes, spelling mistakes, or simply doesn’t make much sense.  You are free to ask me to clarify anything.

 

Me So Stoopid!

On By WendyIn Chronic Illness, Headaches6 Comments

I know I’m having a hard time with cognitive issues lately.  I can’t remember a lot, and there are times I’m just confused.   I should have taken precautions because of this…but I didn’t even think about it.

I goofed on my medication.  Don’t say it…I do have a medicine box….and Stuart fills it for me lately because I’m so wonky in the head, however, I always take my Diamox (the medicine that keeps my CSF lower) at a different time than the rest of my meds.  I take one as soon as I wake up, even if I’m going back to sleep, I need to keep the night and morning dose less than 10 hours apart.  I also take my night dose just as I’m going to go to sleep…..again to keep not too many hours between them.  If I don’t I get a blinding headache when I wake up.  I also take one in the afternoon….I don’t take any other med in the afternoon, so I don’t have a 3 slot box….just AM and PM.   (I hope that makes sense)

OH, I should say….I take one in the AM, one in the afternoon, and 2 at night.  (the 2 at night helps stop the headache thing)

Well yesterday, and I’m not sure I didn’t mess up the night before too….I just don’t know, I tell you I’m confused…and it’s worse now.  But, yesterday morning I took 2 instead of 1…..my CSF (cerebrospinal fluid) dropped, too low.   So I stayed in bed lying flat trying to keep my pressure as even as I could.  Not a good day.  I did not take my afternoon dose, and I thought that would be it.  I went one over, so taking one less should make it right.  Ummmm, nope.   I took 2 at bed time, and I got so sick!  I had a headache at an 8 on a scale of 1 – 10.  Luckily, my migraine meds and ice on my head lessened the headache…but I was swimmy headed (as my mother used to say), and very nauseous.  And so confused.  I will lie here and think, “why am I here?, what am I supposed to be doing?, why does my head hurt?  why is the roaring in my ears so LOUD?…”  I start to get to get all teary because I’m just so off…..it’s very hard to explain.  I feel lost and very anxious about it.

Description from confusedcartoon.blogspot.com These cartoon cats are looks confused. One of them said that " I'm just so confused". Their faces are really crazy as funny cartoon faces.
image from, http://confusedcartoon.blogspot.com/

This morning I woke up and felt great!  For the first time in months.  Stuart was still asleep and I actually pondered going downstairs and making him breakfast, but didn’t know when he’d wake and wanted him to sleep as long as he could….he’s been feeling a bit run down…I wonder why?   Then I got up!  Oh no, I would not be trying to navigate the stairs today, I wouldn’t be doing much, but lying flat….again.  Damn.  I was so happy when I woke up, but that bubble busted pretty fast.  I was so ticked off, then Stuart pointed out….how many days have you woken up feeling good lately?  None….for a LONG time.  So even that is a victory.  We’ll get this medication mix up straightened out.  (he will be giving me that medication from now on, or until I stop feeling so wonky in the head anyway.)

FYI – Speaking of Stuart…..he has had one or two phone interviews and has more lined up….and possibly an in person interview soon.  Most local.  I don’t think we will have to move…but if we do, we’ll handle it.  As long as we’re together.

Cough….cough….

On By WendyIn Asthma, Celiac Disease14 Comments
asthma-airways_lg
To find out more about asthma please click on this picture, or search the internet.

Yes, I am coughing a lot again.  I’ve been coughing for quite some time, it got better, but it has gotten worse again.  So much so I had a hard time swallowing because my throat has been so raw.

It started getting worse on Friday, I saw the doctor yesterday.  She says my Asthma is not uncontrolled.  So I’m on a different inhaler for a while, she said I’d probably start to feel better in about 4 days, I know I slept better last night. Thank goodness.

This issue has been causing a lot of symptoms that we thought were from my other illnesses.  I have not been getting enough oxygen, they tested it yesterday and it was at 95%, not bad, but not great…..and I wasn’t having an attack, so my oxygen levels will drop a lot during those times.  I was also given another test…and frankly I’m not sure what it was called, I had a hard time hearing the doctor, her frequency just wasn’t hitting right.  Anyways, the test showed how much air you can expel when you blow out as hard as you can.  It was supposed to read 380, the highest I could get it was 300, I had to blow 3 times, and I almost passed out.

So what does this mean?  Not getting enough oxygen, and not having my lungs working properly can be causing a lot of my dizziness lately.  Especially when I go from sitting to standing.   I was getting worried because I can’t walk from one room to the other without getting winded and the room starts to move.  I thought the getting winded was because I can’t really do cardio, it hurts my head too much….it raises my CSF pressure.  But now I found out that I’m getting winded so easily because I’m not getting enough oxygen. I also found out this is probably why I’m so exhausted and lethargic all the time.  I sleep so much, and have no energy to do much of anything except maybe watch TV, and sometimes read.  But reading takes comprehension and recall, things I simply haven’t had lately.

Having your oxygen levels just a little bit lower than it should be can really cause havoc.   I knew my mother was going through a lot when she had lung cancer, and her oxygen levels were low, but I feel so much more for what she had to put up with.  I remember the insurance company not wanting to pay for my mother to have oxygen at home…I don’t remember what level they said she had to have but her’s wasn’t low enough.  I can’t imagine losing any more breath than I have and being told I can’t get help.  Luckily her doctor called the insurance company and wanted to know how they could say what her patient needed when they aren’t doctors and haven’t examined her.  She demanded that my mother get oxygen, and she did.   I was impressed with her doctor for that…for some other things, well she took good care of my mother, but she did not handle things well.    But that’s for another rant sometime.

So my dear friends, I haven’t meant to stay away so long, or so often.  I simply haven’t had the energy.  For example, today I woke around 11am, I went back to sleep about 1pm, I woke coughing and sick to my stomach about 3:30pm….it’s now 5pm.  It’s the end of the day for most people, and I’ve only been awake for a total of 3 1/2 hours.  I will probably stay awake for a few more hours, but I’ll be asleep by 11pm at the latest.  You can do the math to see how many waking hours I will have today, it’s too hard for me to think that much.

Update on other things. My darling hubby hasn’t found a job, but he has a phone interview tomorrow, and he had a long talk with a recruiter today (they really think he’d be “perfect” for that job, but we’d have to move to Nashville….if he thinks he’ll be happy, I’ll live anywhere.   The big worry he has is leaving me alone all day.  He’s worked at home for years now, even before I got sick.  I think it will be good for him to get out and go to an office…..I’ll be fine, or I’ll hire someone to come stay with me. Another big worry about Nashville…my doctor’s aren’t there.   I’d have to try to find a Neurologist that’s a headache pain specialist because I have to get the Botox shots every 3 months, and I can’t see Stuart taking a day off every 3 months to bring me to Durham.  I’d keep my ear doc, after having the second CI implant…..(I still don’t know when, I’ve had to cancel many appointments with him..dang-it.)…I won’t have to see him very often unless something goes wrong.  And it just won’t…enough of that!

I mentioned the Botox shots, I got my happy little Botox bee stings on the 7th, and I’m a happy camper!  Oh my goodness those things sure do make a difference.  I’ve gone from having pretty much, NO, pain free days, to mostly pain free or very low pain days.   I’m not afraid I’m going to run out of medication, so I take it earlier and abort the migraine before it takes hold and ruins my life. My doctor also prescribed an NSAID shot that Stuart can give me if I have a really bad headache or have one that last more days.  That makes me feel good to know that it’s available.  She also prescribed a muscle relaxer….after I asked about it….I feel that my migraines last longer because I tighten up so much during it and just can loosen up even after I’ve taken my migraine meds.  She said they do often use that as a cocktail to help.  And it has helped!   I can’t take pain medication any longer…..unless I want to itch for at least a day.  For some reason, I’ve become very sensitive to pain medication.  We’ve pretty much tried them all, but since they are mostly all opioids I’m having a lot of the same problems with all of them.   And I can’t take NSAIDs by mouth, my tummy does not like them!  So that put a big dent in how I could fight my migraines.  Now I feel we are on the right track.  I hope the Botox last a good while….I don’t want to be bombarded with migraines before it’s time to visit the Botox Bees.

There we have it, an update on my little family……oh Max is doing fine, right now he’s trying to push my laptop off my lap.  He loves me so much more when I’m doing something.