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

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.



13 thoughts on “Under Pressure….CSF pressure Up – Down – who knows.

  1. Hugs. The weather is doing a number on a lot of us. Have spent the last couple of weeks with a higher level of dizziness.

    And going to the bathroom more… that’s stress and anxiety making it’s presence known (as if we didn’t know that already).

    I may have already asked this so sorry if the brain cells aren’t firing properly but, have you talked to your doctor about regulating your periods and not having as many per year? I feel like I’ve asked but just can’t remember.

    Hope the weather and other outside influences start working in your favour. And love the idea of laughing at least once a day.


    1. I don’t know if you have asked before or not, but we tried stopping my period and the “period” stopped, but all the symptoms still came every month. Was so frustrating.
      I feel my GYN right now is not the best person to see about these things, and she has brushed me off about a few things. Too bad, she used to be so diligent and good.
      I was supposed to see a GYN my headache doc recommended but we’ve had trouble there. She specializes in hormones, so I was really hoping to get some relief. But we’ve had to cancel twice. Once within the 24 hour policy, once very short notice – both because of me not being well enough. Hubby called yesterday to make an appointment, and they said the doctor would not see me because we canceled 3 times short notice…..and that’s a lie. But do I really want to go to a doctor who does that kind of thing.?

      So now we are looking for a new GYN for me. Stuart’s calling my regular doctor, and my old women’s physical therapist (yes, a physical therapist who works on those muscles that only women have trouble with.)

      Hope your dizzies are better, and your weather is wonderful.



  2. Oh this is no good… you need to feel better, with the icky vertigo and the evil IIH… they both need to just leave you alone.
    but I have a question (I linked to you in my last post, hope thats ok!) when you have pressure fluctuations, mostly with high pressure, but I’ve found it with low too… do you have a harder time understanding the words coming through your CI? I’m starting to wonder if with my IIH if that is what will occasionally distort the sounds I’m hearing, and make speech sound like… well… charlie browns teacher, or like when I first got activated. Even though I can hear it, it doesn’t cross the bridge of understanding.


    1. I saw that you mentioned me on your blog….it doesn’t bother me at all, I was flattered.
      I will answer your question here, and there, in case someone else might need to see it.
      However, I don’t think I’m going to be much help.
      I haven’t figured out if my misunderstanding of words coincides with my IIH or not. I do have a lot of time where I hear things that are wrong, or are distorted. I’m constantly changing programs and volume, trying to get it better. But you have adapted to your CI’s faster than I have. One big reason I think I haven’t adapted faster is because I don’t hear people talking very much. I hear my husband, and the TV…much different. And that’s about it, other than doctors. I do feel I have more distortion in doctor’s offices, and that might be because of IIH….I’m nervous so my pressure may be rising??

      I also think you are having an easier…if that’s the right word…hearing right now because you have 2 ears hearing. I only have one.
      But yes, I do have the Charlie Brown teacher thing happen. I always thought it was because I was on the wrong program or something.

      One of the big things I have trouble with is smells. Everything smells too strong now. Don’t know if that’s because I’ve lost my hearing so my other sense is getting sharper, or because of the IIH. I know I was having trouble smelling things that weren’t there. Like coffee, cigarette smoke, and rubber. But it has gone away for now….hopefully forever. I hate smelling things like that.

      Well this reply is getting long, hope that helps a little bit. Probably not, the real answer is , I just don’t know.

      Let me know how it goes, and if you figure it out.


  3. Dizzy Girl

    I’m new to this site but not to Menieres.
    I was diagnosed in 2004 but had systems long before that. I was wondering if any of you had also been checked for MS.

    I have been to many Drs.
    I received another injection a month ago.
    It did not help. So depression sets in again. Today is a beautiful day and I still will dizzy and nauseated. I sadly noticed yesterday that my right ear has also started to “Pop” I though I was already hearing the “crickets” begin in it but my left ear is so loud.

    I hope you all feel some relief..


    1. Hello Dizzy Girl,
      I’m sorry you are having so much trouble. (I am feeling better, than you for sending me kind thoughts)

      I have been checked for MS. No signs of it, thank goodness.

      I have never had injections. I’ve heard from many that they have worked for them, and from others that they didn’t work for them….so I think it depends on the person.

      When I finally found a good doctor, who has a special interest in Meniere’s, I was already bilateral, and he doesn’t do injections on bilateral people. I have forgotten the reason.

      I have been a strange case. Most people go bilateral within the first 5 years of having Meniere’s. I had it about 15 years when I went bilateral. I had a lot of time between attacks until I went bilateral, then it all came at once. The vertigo was so bad, I had the endolymphatic decompression surgery on both ears. But my hearing went from moderate, to severe and profound in months. That is also very strange. My otologist told me he never thought I would get to this stage. But now I’m on my way to a second Cochlear Implant.

      Being deaf isn’t nearly as scary as the vertigo attacks.

      Do you have anything to help with the nausea? I take phenergan, I know it makes a lot of people sleepy, I know I’d rather sleep than feel like I’m going to throw up any second. But I really don’t get that sleepy from it. I also take Valium for the vertigo. As soon as I feel the possiblity of vertigo coming I take one of each. I’ve stopped many attacks that way, and have lived better day to day.

      I know this is very depressing, especially at the beginning. I am a strong believer that we all need to see a therapist…especially at the beginning. My husband and I go to a therapist together, I had such a hard time dealing with losing my independence, and he had a hard time talking to me about it all. Having that third party really helped. And she sees many people who have chronic illnesses, so she has been the best help I could ask for.

      another thing that really helped me is the book, “How to Be Sick” by Toni Bernhard A very moving book that helps deal with chronic illness.

      I hope you get some relief soon.


      1. Dizzy Girl

        Thanks Wendy

        I will get my husband or mom pick the book up. We’ve been to counseling.
        It hasn’t helped me. To be quiet honest I am very bitter. My husband is so good to me. He has so much on him. He tries to instill in me to take it day by day or hour by hour. My Mom is also a huge help .
        I was thinking before I got that last injection that I was becoming bilateral. I even mentioned it to the Dr.
        I had been hearing the crickets start.
        Then this week the popping started. 😦
        I didn’t even go to my follow up visit on the 5th.
        I just couldn’t !
        I also take Valium and phenergan.
        And a Fluid pill.
        This Dr. Gave me a new nausea med to try Ondansetron.
        It doesn’t make me a zombie like phenergan. But I still have phenergan !
        We have been slammed with front after front here on the coast of NC.
        (Near Wilmington NC)
        I tried to go through some paperwork this week and ended up making myself sick, which affects me in the days ahead.
        Thanks for being here.
        Hope you feel better.
        All of you.


  4. Darn! I was hoping things had calmed down for you. What a bummer!
    The weather can create bodily havoc on arthritis, too. Just sucks!
    Let’s hope for some calm, warm, sunny days and relief, right? You poor baby! I really hope you feel lots better soon. 🙂


  5. bipolarmuse

    That must have been so miserable and confusing for your symptoms to fluctuate like that. I think of you often and always send positive thoughts your way… ♥


  6. Knew you weren’t feeling well, but seeing it all written out like that drives home just how much you are trying to deal with — my heart and hugs go out to you.
    The idea of having less periods per year has been used for various issues, and as sunshine and chaos mentioned, perhaps you could consider that. Not an ending to your period, but a change in how it influences your life.
    Hubby has a bad case of Tinnitus — gradually got worse over time. I’ve been looking into it, and there are devices that can help deal with the jet engine roar. For example ear plugs (and I guess some transmitting) that make white sound — something that works for some people. Or another version, softly plays music — just loud enough to help mask the tinnitus. I can’t find the brochure (just went to look for it and as usual, it wasn’t where I thought I’d put it.
    I’m trying to organize my disorganized life so maybe I will find it.
    And chronic illness experiences always seems to come in big clumps; one of two might be manageable, but beyond that it takes a great strength of spirit to continue to seek answers and relief.
    Sending hugs; wish I could send you a big bouquet of gladioli, sunflower (some of the smaller blooms in interesting colors, and gerber daisies in wonderful shades of orange and gold, and the prefect vase for them: square, heavy glass (perhaps with waves or images from the nature all around us) with colorful stones in the bottom. I’m sending the healing spirit of the natural world and the beauty of flowers.
    Take good care; I hope you get as many issues as you can within your control.


    1. And sorry I went on so. Tend to do that when nervous and I have session with cbt and I didn’t go any of my home work — I forgot to look over notes and forget what the goal was. Sigh.


      1. It’s alright if you go on and on….no problem.
        You know I’m notorious for it, that’s why I don’t make it to all the blogs i want to.

        See my reply to Sunshine and Chaos about my periods…to long to say again. : )

        The tinnitus helpers, like white noise and such, don’t work on deaf people. : ) It’s so easy to forget I can’t hear….I’ll wake up often and wonder why it’s so quiet and then why I can’t hear? Oh yeah! I know, I don’t do that any more.

        When I have my CI on, the tinnitus is better…well I don’t notice it as much….in that ear. But still it will sometimes break through and over ride what I’m hearing in the outside world. My ear that I have nothing for….well that one just overwhelms me sometimes. But normally, I can get through it and push the sounds away….that sounds strange, what I mean is…I try not to fight the sounds and just make them part of my background noise. That way, I don’t notice it as much. But sometimes, it doesn’t work.

        Thank you for the lovely flowers. My maid of honor carried Gerber daisies at my wedding. I love sun flowers…any kind. And daisies! i’m a simple girl I guess. Sometimes when Stuart goes to the store he will see sunflowers on sale and get me some, it’s so sweet.

        I’m doing better.
        thank you for the healing thoughts


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s