Tag: CSF

Let’s Talk About Me Feeling Better…..Part 1

On By WendyIn Chronic Illness13 Comments

 

Freedom by w.holcombe
Freedom
by w.holcombe

First, I want to say, I’m not cured of anything.  Nothing is gone completely.  I still have all my Meniere’s, and it’s symptoms.  I’m still deaf, with cochlear implants.  I still have Migraines.  I still have Cluster Headaches.  I’m still Bipolar. I still have Fructose Malabsorption.  I still have all of my chronic illnesses.  I am still disabled  I just don’t have some of the symptoms as severe as I did 3 months ago.  Truthfully, I am living a life that I didn’t think was imaginable 3 months ago, and in this series I’ll talk about some of the reasons I now think it is possible.

There have been a number of things that have contributed to me feeling better and I think it’s time that I laid them all out there for you.  I haven’t revealed everything before for a couple of reasons.  One, I was afraid it was temporary and I still am, 3 months is still a relatively short amount of time to tell if these things are going to continue to work, and two, one of the things is something that could be dangerous (and really may stop working at any time)….let me explain.

I will explain the dangerous one first.  This I wasn’t even sure I was going to talk about…but I think I should.

Remember how bad my headaches had gotten?  The migraines wouldn’t go away, after the Botox had been working so well and suddenly it stopped working?  I went for about 3 months of non-stop migraines.  It was horrible!!  I was put on steroids and had that severe vertigo attack and then was put on a different steroid to try to stop it….remember all that mess?  Then I started getting cluster headaches.  Remember?  If you are a new reader you won’t remember that, but it happened…and then…

by w. holcombe
by w. holcombe

One night I had a bad set of cluster headaches and didn’t wake up the next day until 2:30pm.  I woke up and my first thought was “OH NO! I haven’t taken my Diamox!”   Diamox is the medication I take to control the Idiopathic Intracranial Hypertension (high cerebral spinal fluid pressure ).  Without this medication I normally have an excruciating headache!  However, I suddenly realized, I didn’t have a headache.  For the first time in months, I didn’t have a headache.  Note: NORMALLY, when I don’t take this medication, I would be screaming from the pain in my head.  This day I did not have a headache.

I decided not to take it and see what happened.  No headache.  The next day.  No headache.  Days later, No headache.

Please forgive me for not telling you, but the reason I didn’t mention this before is because going off your medication without your doctor’s supervision can be very dangerous.  I should have called my doctor when I decided to stop taking the medication.  This could have been a medication that I needed to be go off slowly.  I could have harmed myself.  If you feel you are taking a medication you feel you need to come off of, please discuss this with your doctor before you stop taking it.  Do this under your doctor’s supervision.  I did not do this like I did. I was irresponsible.

I soon had an appointment with my neurologist, otherwise known as on here as my headache pain specialist, and I discussed this with her.  Luckily, I didn’t cause harm to myself, but she did say I should have called her and told her what I was doing, just in case.  The drug I was on is not one to play around with.  We aren’t exactly sure what happened.  It was evident that I needed the drug when I was put on it, I had a lumbar puncture to prove it and when I went on it I felt much better.  As I said earlier, normally if I didn’t take it I would have had a very bad headache.  We thought it would be silly to put me through another lumbar puncture just to prove I no longer needed it, as that was pretty evident.  The hypothesis is that somehow my pressure spiked, (perhaps I was lax in taking my medication…I’ve been known to do that before, especially if I have a vertigo attack, I can’t keep medication down, or I fall asleep from exhaustion and don’t take it….) and I had may have had a “blowout” causing my spinal fluid to drop.  I used to have that happen before, but the leaks would heal, the pressure would build back up and the whole thing would happen over again.  That’s why I was put on the medication, to try to stop that cycle.  This time the blowout may have cause a leak that didn’t heal, essentially causing my own “shunt” but without the surgery.  So now I don’t have to be on the medication.  Crazy, but that’s all we can think of???  Or maybe my body just regulated its self?  It doesn’t really matter, I now feel better without the medication.

This is probably the main reason my headaches are so much better.  Again, I still have headaches, both migraines and clusters.  The migraines are just much better than they were.  I can’t say that about the clusters because they didn’t start until right before this happened.  I don’t have a lot of these so far.  I’ve had more than I’d like, and I hope they don’t increase.

This could also have helped some of the vertigo, but I don’t know.  The only time my pressure changes really cause vertigo problems I have very severe vertigo attacks.  I have not been having the horrible vertigo attacks, the kind that where I spin for hours and lose all bodily functions, but I haven’t had those in a while.  I have been working hard to control those attacks.  That’s part of another thing I’ve changed…something I started changing before the whole medication things happened…but I wanted to tell you about this first.   So, to tell the truth, I really don’t know if this has helped the Meniere’s symptoms or not.  Mainly, I think it helped the horrible headaches.

Now there is a chance that eventually this leak may heal and my CSF pressure will once again build back up and I will have to go back on this medication.  I sincerely hope this is not the case.  The medication that is used for this, is not a friendly drug.  I hated it.  Side effects…ugh.  Again, another reason why I didn’t mention this, I knew there was a very real possibility that it would be a short lasting “fix”.  Now after 3 months, I’m a little more optimistic.

There are TWO other major things I changed that I believe have caused major life/health transformations.

One of is my Diet.   (This will be Part 2 of the Feeling Better Series)

One of is studying Mindfulness Based Stress Reduction…this is the best thing I’ve ever done for myself!  (This will be Part 3 of the Feeling Better Series)

 

 

 

 

 

 

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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.

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.

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.

I’m so Grateful for my Emergency Kit!

On By WendyIn Chronic Illness, Meniere's Disease8 Comments

I always hoped I’d never need it.  When I made up my emergency kit it was more a peace of mind thing, not a real thought that I’d ever need it.  On Wednesday, I was so grateful I had that emergency kit!  (TMI -This post contains information that may be too much for some people.) 

The day started off so wonderful.  You can see that in the last post….but later that afternoon I was hit with an attack, and I was in public!  We decided to go out and check out a few stores that carry allergy friendly foods, but we were hungry and thought we’d grab a bite to eat.  (yes I know, too much food out…too much sodium! But I had steamed chicken with vegetables and rice, no sauce….I ordered smart!)  We were sitting in the restaurant and Stuart pointed out something to my left and over my head, I glanced at it and everything spun around.  It scared the mess out of me!  First I started to panic, then I felt it was slowing down.  I thought it was Migraine Associated Vertigo and would pass after I took my migraine medication and emergency pills.  Boy was I wrong!  I took the pills and things didn’t get better.  I was getting sick.  Very sick, and the world was spinning faster and faster.  I handed Stuart my purse and asked him to get my emergency kit.  I needed to cool down, and I needed something to throw up in (just in case).  I have cold packs in my emergency kit that turn cold when you twist them…or hit them really hard.  This was a wonderful thing.  I needed to cool down my core fast.  We left the restaurant as soon as I could stand.  It had slowed down so I thought the medication was finally working and we could get home with minimal discomfort.

I was VERY wrong again!  We drove a ways fairly well, then the spinning got so much worse.  I couldn’t stand the car moving.  I asked Stuart to stop the car, he couldn’t stop where we were, and I started to panic….”Please just stop the car!”  It was torture.  I was actually screaming before he could get stopped. He stopped.  Later he told me he was not in the best spot. It was pretty public and he knew I’d feel uncomfortable. Frankly, I didn’t care, nor did I notice. I was throwing up (thank goodness for those little garbage bags I packed in the Emergency kit), and I was losing control of my bladder. I was devastated. We were in Stuart’s father’s car, it had just been detailed….I mean like an hour before we left in it….it has leather seats! How could this be happening to me, in my father-in-law’s Lexus? (luckily it was his older car, but still, leather seats!!) Stuart swears when he went to clean it up, there was nothing on the seat, and no vomit anywhere. I did miss some the last time and got it on me. I’m so glad I was wearing a reusable pad, I use them for my menstrual cycle, but I also use them most of the time in case I sneeze or cough and pee a little.

We got home, and got me inside. I collapsed on the couch and passed out. I woke up an hour later gagging, but didn’t throw up. My body was spasming, it feels like I’m convulsing (not that I’d know what that feels like first hand), this lasted what felt like hours. I got very scared. I was having a hard time breathing with the spasms, and for the first time during one of these attacks I was afraid of dying. Then i passed out again, but only for a few minutes. When I came to, I decided I wanted to try to get to the bed. We succeeded. Not without much difficulty, but I was out after that for a few hours.

I know most of you have heard my horror stories of my vertigo attacks before, but the main part of this recount is how much my emergency kit helped. In it I have cold packs (to cool me down), small trash bags (to throw up in), large Ziploc bags (to put the soiled items in…and bags that have throw-up in them), wash cloths (to wipe my mouth, and help cool me down when they are wet), extra meds (we always have my emergency pills on us, this is an extra safe guard and it has more meds than I usually carry), a card explaining what is happening to me…and I keep a water bottle with me (normally this is just to drink from, but when I’m having an attack it helps to wet wash cloths and I need to rinse my mouth).

I will never think I can go without that kit again. I was recently thinking it was taking up too much room in my bag, no more! If I go out with nothing else, I will have my kit!

I’ve been working on this post since Thursday, the day after it happened. I’ve had days and days of extreme disequilibrium. I couldn’t move my head at all without seeing the world move. It was like it just didn’t keep up with my head….strange. I just started walking some unaided yesterday. Today I feel better and can get around by myself, but I still feel a bit wobbly. I’m pretty sure this wasn’t just a Meniere’s attack. My hearing in my right ear did drop significantly, and hasn’t returned to its normal level…that’s weird for me, normally after the attack ends the hearing comes back…at least almost to where it was. We think I had another spinal “blow out”, and my Cerebrospinal Fluid Pressure (CSF) dropped. Stuart suggested the first night after the attack to not take my medication that controls the high CSF, it’s a strong diuretic and I couldn’t afford to lose any more fluids. But I started taking them again the next day after I was sure I was well hydrated. Then things didn’t get better. I was scared that I would feel that way all the time. I was having a big pity party for myself (sorry I didn’t invite you all). Yesterday morning, Sunday, I woke up feeling much better. I took my CSF medication, then I got up and fixed myself some breakfast. After making breakfast I turned and the world spun, dang-it! But it was at that time I realized my CSF pressure was too low. I had all the symptoms…the wooshy head, a headache when standing..ect. I went back to bed and lied down flat and the symptoms lessened and went away. Ah…yep, low CSF. So yesterday I spent the day lying flat. I’m holding off on the high CSF medication until I get signs of high CSF, then I’ll ramp back up on them.
Today I’m feeling much, much better, but still weak. My main goals for the day are a shower, and finishing this post…not necessarily in that order.

I’m sure I’ll feel better and better. The weather here is still gorgeous. We had an overcast day, but it was still nice. Today we have the windows open and are enjoying the fresh air.

Migraines, Vertigo, Disequilibrium, Pain – mix and repeat often

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain12 Comments

Where have I been you ask?  Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner.  I logged on today and I had over 230+ emails in my inbox.  Normally there are about 30…so how many days has it been??

I’ve been much sicker, if that’s the word to use, lately.  I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.

I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair.  It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil.  I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall.  My latest fight with the tub?  I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub.  Yes, I said, LYING IN THE TUB!  Only me right?  Ok, it was a little more than just lying still.  I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have.  But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes.  So I’m thinking, no big deal.  Then Stuart looked at my ankle and said, “Oh My!”.   My ankle was very swollen!!  My lower back hurt, but my ankle really didn’t.  If you touched the swollen area it hurt, but not much.  This happened last Friday night.  On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again.   (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.)  So now you know.  I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.

What else had been causing me frustration and just plan fear lately?  I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November!  We are leaving for Tucson, AZ the last week on October, we won’t be here in November.  So they scheduled it for October 20th…I cried.  I had the worst time with migraines this past month.  Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work.  I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up.  Throw in some vertigo, and we have a great party going on.  Luckily, the appointment has just been changed to October 3rd.  This should be during my period, so it will be a real test.  Big problem now?  If it works I need to have another shot regimen in 3 months, we won’t be here.  I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections.  Actually, I doubt I will be able to, so it will be more like 5 months between injections.

Recently I’ve been having more vertigo, and constant disequilibrium.  Frankly, it scares me.  I’m pretty sure some of this is Cerebrospinal Fluid Pressure.  We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one).  Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low.  I started back on the regular form of the medication yesterday, I hope this really is what’s wrong.  Because the vertigo is scary.  I’m proud of myself about how much better I’m dealing with it.  I don’t panic as much, I’m sure I would if it was a severe attack.  My biggest fear I have is that when a severe attack hits it will never end.   I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day.  Luckily, I was able to sleep through some of it.  Then when it actually got to be bedtime, I couldn’t sleep.  So many things going through my head.  I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am.  Today, I’m not spinning, but I can’t walk straight.  I can’t move my head at a normal speed or I will fall down from the disequilibrium.  In the past 48 hours, I’ve been to the bathroom once unaided.

OK…I know this is another venting post.  But I’m scared.  What if the change in medication doesn’t work?  Then why is this happening?  We’ll figure it out, or I’ll learn to live with it!  Right?

The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do.  Of course, he said that’s natural, part of self-preservation and all that….  I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did.  And I mean it.  The thought that others go through this is heart breaking to me.

The Lorax
photo from smh.com.au

I do have some good news about my hearing!  (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.)  Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer.   I used the direct link cable and linked the computer sound up to my processor.  I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different!  I heard the movie!!  I heard the characters the way they were supposed to sound!  I really heard it all, just right!  Isn’t that amazing?  That gives me hope that one day my CI will give me sounds that are normal.  Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more.  It’s coming along!  And The Lorax is my new best friend!

 

Hard to Get Started Again…

On By WendyIn Chronic Illness16 Comments

I miss blogging, I miss my blogging friends….but it’s hard to get started again.

Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed.   Eh….maybe not so much.  My life really isn’t that exciting.

I went through a bout of depression, that knocked me off my feet.  By that I mean, I didn’t want to get out of bed.  I’d wake up and think, what reason to I have to get up?  I couldn’t think of a reason, and the sleeping side effect was not helping!

Vancouver Sunrise by Lauazee from DeviantART http://fav.me/d32s7vm

I know part of the depression started when Sandy died.  But the biggest problem is a bit strange….at least to me, my therapist says it’s normal.  I’ve been feeling better.  The Meniere’s isn’t bothering much at all since the surgery in December.  The Intracranial Hypertension (High CSF), is minor and under control with medication.  My migraines are not as painful, but they are causing vertigo often!  So much so that there is no way I’ll ever be able to drive again.  The Migraine Associated Vertigo (MAV) gives me NO warning.  I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately.  I can’t even walk around the block by myself, or do things in the yard.  I tried one day, and it did not end up good.  So I’m stuck in our house, unless I have someone with me (meaning Stuart).  I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.

But I’m better.  Really.  It’s kind of funny.  I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….”  And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately.  So I started thinking about it, and I felt better.  Also we’ve been talking about fostering a dog, or perhaps adopting.  Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her.  This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.

Now that the sleeping has gotten back to normal, I’m feeling better about other things too.

We went to see the audiologist on Wednesday.  I picked out all the options for the Cochlear Implant (CI) that I want!  We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt.  And all I can do is, wait patiently.   I’m not the most patient person!

Now, I’m started… let’s see if I can’t make a habit of this!

Daily Schedule #HAWMC Day 25

On By WendyIn Chronic Illness2 Comments

Today I’m using a prompt from the Extra prompts they sent us.

Daily Schedule. Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

photo courtesy of istockphoto.com

Honestly, I don’t have a set schedule for any day. My days are ruled by my conditions. If I’m having a day filled with vertigo, or migraines I spend the day in bed. If my hearing is way down, I spend the day as alone as possible. I often have doctor’s appointments.  My days change from one to the next, a lot.  If I’m feeling a bit better, I do more….

Here’s a recent weekend day.

After a restless nights sleep I awake around 9am with a blinding headache. I’m seeing double, with shadow spots on the walls. I take the medication that should lower my CSF pressure(cerebrospinal fluid pressure), and wait to see if it will relieve the pain. My husband brings me some breakfast in bed, along with the rest of my morning medications. The headache has not eased. Finally, I decide I should take some migraine and pain medication also. I try to sleep some more, this time sitting up, hoping my CSF pressure will lessen.

Noon – The headache is still there but much better, I’m hungry, but not sure I’m steady enough to go down the stairs. My husband brings me lunch. I decide to check my email, and do some things on the computer. Focusing up close is much easier than focusing at a distance.

2pm – Time for my next CSF pressure pill. I’m feeling much better, and steadier. We decide to take advantage of this time feeling a bit better. I want to go to the local Co-Op to pick up vegetables and meat for dinners for the week. We had a good trip to the store, and a nice ride home.

4pm – Home. I’m tired just from the little bit of shopping we did, and the ride. I help put the groceries away, and start to plan dinner. I turn and feel the world move. Oh no.

5pm – 9:30pm I have vertigo. This vertigo is caused by the Intracranial Hypertension, not the Meniere’s. I can tell because if I keep my head in one position and concentrate on something still close to me I will stop spinning, but if I move, the vertigo returns. If I was having a vertigo attack from Meniere’s I would not be able to stop it, no matter what.

9:30pm I am completely exhausted from the vertigo attack. Finally, I can move. I eat a little something, and head to bed….with a lot of help from my husband.  Take my nightly medications, and try to sleep.

This is a somewhat normal day. I don’t always have vertigo. I do normally wake up with a blinding headache that often takes hours to get under control. And we always try to take advantage of any time that I’m feeling well enough to do something. (I know going grocery shopping doesn’t sound exciting to most, but I love to cook, so shopping for food is exciting to me.)

Wendy just write…. #HAWMC Day 12

On By WendyIn Chronic Illness2 Comments

Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!

(written April 5th)

image courtesy of http://www.thechicagobridge.org/

“Wendy” just write, don’t stop, don’t edit. Post!

Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.

Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer.  What can I offer.  I can’t even hear them to talk to them.  I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests?  I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!

This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!

I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!

I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.!  I was so busy….I didn’t think it would end…

After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.

I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece.  But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.

Now I’m falling apart….and I’m angry at myself about it!!!?????

I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad.  I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me!  I’m angry I can’t lose weight….I’m MAD AS HELL!

I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that.  However, I know me, and I will. I’ll get it together, and get myself another lease on life.  Life is good.

I have such a good husband. It can’t be all bad. I must think of the good days.