22 days…

Trying desperately to hold on to the computer and write these words.  Concentrating up close sometimes helps…today I’m not so sure.

Here’s a Haiku that probably breaks all the rules, but bear with me today….it’s been a really rough few weeks.  Last night and this morning being the worst.

Migraines,Vertigo – Bad!
Weeks full of pain and spinning,
why can’t someone help?

My symptoms have changed.  Doctors look more confused when they look at me.  That’s disconcerting.

As you know I saw Dr. Gray, my pressure was a little over 21.  That was what my closing pressure was the last time when I felt my best…confusing.  She mentioned that pressure doesn’t take into account volume and my volume was higher because of the excess fluid from the surgery..so does that mean my pressure was high or low?  She’s thinking high.  I wrote about this earlier, I think, so I won’t go into it again.  But I do feel like I’ve kind of stumped her….maybe just a little.  I do wish I was one of those patients who’s tests were more cut and dry.  Here, let’s take this blood test…oh you have this, take this and feel all better.  Or at least, you have this, here’s how we’ll treat it, but I’m sorry it won’t go away.  I can handle that.  But this.  I’m having troubles with.

I really understand now how my friends feel who have no diagnosis.  Like Allison and Maureen who know they have some vestibular issues but have no idea what it is.  I just keep thinking…why can’t they fix this?

Yes, I have Meniere’s we all know that.  But these migraines are much worse than they used to be, and the vertigo is very un-Meniere’s like.  I keep having positional vertigo.  That doesn’t go along with Meniere’s.  (and why did I have the 5 months of no symptoms last year?)

The other night I had vertigo all night long, but I was alright as long as I lied on my right side. At first I didn’t realize this, I happened to be on my right side, everything was calm and I went to turn over, I got half way there and screamed.  I actually screamed.  I scared myself, I had no idea the scream was coming out of my mouth.  So back to the right side I went, but that is the hip that is in constant pain so that was not the most comfortable position to be in, however, if I moved, I started spinning.  Finally, I fell asleep, and you can guess what happened, I turned over in my sleep and woke up spinning like crazy.  Ahhhh!  It was a long night.

I saw the neurologist who is a headache pain specialist on Wednesday.  She looks like a Pixie.  : )  She seems very intelligent and knowledgeable about my case, and migraines.  But she really didn’t look like she had knew what to add at this point since Dr. Gray had just seen me and added the Topamax we kind of needed to see if it will work first.  She said to continue the Topamax Dr. Gray prescribed but she wants me to ramp up slower until I hit 200mg.  So I went from 50 to 75mg Wednesday night.  Last night was one of the most painful nights I’ve ever had.  My headache pain was at a constant 8 or 9.  At one point it reached a 10 but I was too weak to ask Stuart to take me to the hospital.  I kept ice on my head, and kept drinking water.  I was so very thirsty.  I could not keep my eyes open.  It was a strange thing, I didn’t feel like I couldn’t’ stay awake, I felt like I couldn’t stay conscious.  I had horrible dreams, in which I would just sob and my head would pound.  I know the dreams were caused by my headaches, but they were so disturbing.  In one Sandy was bitten in half by Alligator, and was still alive and suffering.  See horrors!!

Today Stuart has called all 3 of my doctors.  If you are seeing 3 doctors, who do you call when things go so terribly wrong?  First he tried Dr. Atkins, but we didn’t get a direct line to her nurse so he had to leave a voicemail in the generic mail box for the whole practice…who knows when she will get that message.   He called Dr. Kaylie.  He said, he thinks I should get another LP (lumbar puncture).  oh joy.   He called Dr. Gray.  They had a long discussion the consensus is that I still have high pressure.  She wanted me to come in tonight but it was 4:30pm and she still has 2 patients so she didn’t think it would be wise, so she is talking about Monday.   However, she wants me to take some Diamox tonight.  She said that will tell us if this is high pressure or not.  I was in tears, my head pounding as Stuart was on the phone…I yelled, “Fine whatever, just make it stop!!”

Of course, now my fear is, it will just make it worse.

I won’t deny it.  I’m scared.

I’ve had vertigo every day for 22 days.  No not constant, but at some point during the day for varying lengths of time I’ve had vertigo every day.  The severe disequilibrium is not as debilitating, but it’s not picnic.  And I think I’ve talked enough about the headaches.


13 thoughts on “22 days…

  1. Wendy, I don’t understand this pressure stuff, but I understand vertigo and nausea. Of course my dizziness is a “1” compared to your spinning world. I am so glad you have Stuart, and good doctors, but good God….why can’t they fix this?


    1. my dear friend, that is what I’ve been saying for the past 22 days! I get…this is complicated. I take that to mean…we really aren’t sure.

      i’ve also gotten, you seem to be very sensitive to pressure changes.

      yeah…I really don’t get all this pressure stuff either…and I’ve read a LOT of studies on it. the more I read the more confused I get.

      all I know is…I’m so very, very, tired. so very, very tired. thank you my dear. wendy


  2. I wish I could fix you. I wish someone could just fix you, no matter what it took. I know all of us can’t be fixed but that is what I wish. I feel sad for you and find you so courageous, you are inspiring. All I can offer is my friendship but that doesn’t seem to help you. I wish I could help you, truly help you. Love, Laurie F.


  3. Fizzy

    I hope they can get some sort of answer for what is going on! You are so brave , and just know that it will get better. i acnnot imagine that many days like that and how tired and exhausted you must be.
    Sending you love and prayers that someone can get this fixed as soon as possible .
    Big love and hugs xx


    1. Fiona, I hope you NEVER find out what this feels like. I hope no one does. You’ve been going though enough lately…and you have such happiness awaiting you soon. I know as much as you try the stress of a wedding gets to you. ummm….how about having the officiant come the day before anyone else does, then you are married during the ceremony and there is no pressure. (I know a couple who did that!)

      love you wendy


  4. Healing hugs to you. It is so frustrating and agonizing. Logically, we know the workings of the ear is complex and we know that there are doctors doing research to figure things out and to offer relief to patients. But, when you’re the patient, all that doesn’t matter and it becomes “logic be damned”. You want relief now and you just want to feel good again! But, as they try to help you, other things start happening so you’re not sure if it’s the original problem, or medication, or whatever. And they are all pretty much working with the same information and research. It ends up being a domino effect of more symptoms and more buts and more questions than answers.

    Are any of the doctors saying anything about getting rid of the excess fluid from the surgery? Or is the amount of excess fluid you have right now still in the normal range considering the recovery time from the surgery and it’s all going according to plan?

    I hope the new neurologist is able to help you. And the LP, too. Hopefully, you can get in Monday to have it done.



    1. Maureen, Yes to everything, you said. I’ll answer the last part in a short update post.

      about the excess fluid from the surgery, it’s being absorbed as it should be. it’s not abnormal. so they aren’t paying attention to it…I don’t think. some times. i see Dr. Gray thinking, and she doesn’t say what she’s thinking…so you just aren’t sure. But you know those wheels are turning.

      I’m just frustrated. and tired but did have a decent night’s sleep. not long enough, and wish I’d had enough the one time I woke up and felt better!! but more on that….soon.

      I just want it to stop….please. wendy


  5. silly question but do you know what triggers your migraines? Changes in barometric pressure, sleeping the “wrong” way, eating certain foods, stress (so I get a migraine and a tension headache). I know that migraine meds are expensive, and you often doin’t get many pills (based on your health insurance if you have it). If there is something you could change in your environment, maybe it would help. Keep a migraine log (how high the number, what you were doing, do you wake up with it. You’ve probably done all this before, but since I get migraines (the “real” ones and craniumum crusher headaches that a neuralogist said where actually small migraines), and the headaches have increased, I’ve been thinking about migraine stuff again — since I’ve been getting more headaches, and daily have sinus, tension, small migraine– often from sleeping in the wrong position.
    Since the migraine meds are expensive (and I don’t get enough to make it through a month), I’ve started to take generic duluad (spelling way off — I’ll look it up). It does help with the pain, and means might spend the morning in bed with a headache, but be better by noon.
    I really, really hope they can do something about those headaches and migraines — have they done an MIR or cat scan of your neck and head to see if there is something that’s causing the pain?
    I’m always sending you good thoughts, and (((((hugs))))) — gentle ones of course!


    1. Ah….the causes of my migraines….but there are so many! Recently they have been caused by uncontrolled cerebrospinal fluid pressure, for some UNKNOWN (I know we hate that word) reason, my body is making more CSF than it needs. So my brain has idiopathic intrcranial hypertension….yeah, High CSF in my brain. And it was squeezing my brain. So the new meds that we have to tweak.

      But I also get migraines from mostly hormonal change, and weather change, other causes can be allergies (so spring I get a lot) and dust. (so we have a cleaning service) and many Chemical’s I’m sensitive to. Please no perfume on me.

      I am lucky, I have been approved for 18 Maxalt instead of the usual 9, don’t know how my doctors do it. but I usually only have to take them during my period and ovulation. so I don’t get rebound headaches. If I were taking them every day i would be. I also get Hydrocodone. And if need be i go in for a shot. they were trying Topamax, but just changed it to Diamox because it lowers your pressure faster. I need this to work. I do not want another surgery. (at least not until I get my cochlear implant!)

      I just saw the migraine specialist for the first time, and it’s hard for her to work new meds around the CSF meds. but she’s good, once the CSF is figured out I think she will work it out.

      luckily we do have insurance. i was thinking today, just how lucky I am that Stuart came into my life when he did. He saved me, he really did.

      thanks for caring, I owe an update. wrote one then read it and thought…what the hell were you thinking? so I won’t be posting that.

      love wendy


  6. Hi Wendy,
    I am catching up on blogs and I am almost afraid to read the next one. I keep hoping this will abate! You poor thing!! Breaks my heart to hear you are still dealing with the vertigo and headaches after all these weeks!! 😦

    I can relate to the lying on a bad hip, though. I can only lie on my sides because of back pain and both hips have OA that has gradually gotten worse the past year–enough for them to be more often sore than not sore now.

    I wish I could wave a magic wand…for both of us, sweetie!! I’m off to continue on reading blog posts. Got my fingers crossed. 😉


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