For some time now we’ve know that I may have a type of high Cerebrospinal Fluid Pressure, where it rises too high then blows out and goes too low.
I mentioned that they caught it in the high level this last time, and we have a name for it. Idiopathic Intercranial Hypertention (this is a link to a Wikipedia article if you are interested). I’m going to call it Intercranial Hypertention of IH while I’m talking today…Okay?
I won’t sugar coat it….I’m scared.
I’ve talked about some of my symptoms. They don’t know if they are being caused from the IH or from the medication side effects, yes they are that similar. Can you believe that? I will be going back in soon for another Lumbar Puncture.
So why haven’t I felt like this before. Some times I may have for short periods and just thought a Meniere’s attack was coming on, or any number of my problems, but remember, I’d have blow outs. Literally, my spinal column would start to leak in weak spots and my pressure would fall, often way too low and I would have those symptoms. If you’ve been following me for long, you know what that’s all about.
This time, not only am I having balance issues, but it’s affecting my vision. Remember, I’m losing my hearing at a pretty rapid rate. Now, I may be losing my sight.
I had not read much on this, I thought my pressure would have to be much higher for this to happen, then I read an article on the Intercranial Hypertention Research Foundation site last night that startled me. The person who wrote it could have been interviewing me. Here is excerpt from the article about visual symptoms,
“The most common visual symptoms are:
Transient Visual Obscurations (TVOs): These are often described as momentary grey spots, or a dimming or blackout of vision that occur in one or both eyes, especially after a change in position (such as standing up from a seated position). TVOs are the most frequent visual symptom but are temporary; vision generally returns to the affected eye or eyes after the TVO episode, which lasts approximately 30 seconds to a couple of minutes. They may also be accompanied by pulse synchronous tinnitus.
Blurred vision: Blurred vision may be a direct result of papilledema and swelling in the surrounding retina. It can also be the result of a retinal hemorrhage.
Double vision (diplopia): Double vision can be due to sixth nerve palsy.
Decreased contrast sensitivity: Over time, chronic IH may affect the ability to perceive changes in contrast. Some with IH report examples of this decreased ability, such as the grey or faded out appearance of black text against a white background. ”
It does mention that ” in many cases, the surgery successfully relieves optic nerve swelling and improves or restores vision.” That was very encouraging. I’m also very hopeful they will get this under control before things get too advanced, but I have not been feeling good for some time now.
We all know acceptance of a chronic illness is a big hunk of the battle. Once you accept it, you can do so much more to make your life more tolerable. But how can I accept this when I don’t understand it yet? When I feel so confused so much of the time? When I’m told, who knows, you may have to have a shunt. Oh, that’s great to hear. A shunt. More brain surgery to put a tube in my brain to drain fluid to my abdomen do they can control how much CSF I have all the time. So if I have a shunt, will this interfere with me getting a cochlear implant?
More questions to ask the doctors. And the new headache specialist hasn’t returned Stuart’s calls. Not feeling good about that!
So right now, there are so many unknowns. I had a strange vertigo attack yesterday. It was a positional attack, but it wasn’t really. If I got in one position it got much better but it was still there and everything was doubled. I was freaking out. In full panic mode. Sweating, and these little cries coming out of me, saying something is wrong, this isn’t right….stop, please stop….and trying to slow my breathing…but not doing a good job. Unfortunately, we were downstairs, and Chris witnessed most of it. I was mortified. Finally, I calmed myself down, if I can get to the point where I can just chatter, about nothing, just talk and talk…I can let it go and even if the world is moving I’m somewhere else.
Afterward, we came upstairs. For most of the night I was off. The walls are wavy, the floor it tilting, I’m living in a Fun House, but I’m the only one who sees it. For days I’ve been telling Stuart that I feel like something bad is going to happen, someone is going to die. Truthfully, I thought it was our dog. She’s 19, she is doing well, but in dog years she’s close to 100. Last night I broke down and was convinced I was dying. I told him how sorry I was, that I know I’ve talked about giving up but I promised I hadn’t given up on him that I was still fighting but I was sure I was dying. At first he tried to say no, but then he knew he just needed to talk to me. I told him what I wanted at my funeral, or rather who I didn’t want there…I want a party instead of a normal funeral where people remember me and have fun, I told him to display a photo of me when I was skinny, not a recent picture. I wanted a bouncer at the door, and everyone had to give their name, if someone gave their name who was on the NO list, they were to be told, “I’m sorry, you should have visited her when she was alive, you are not needed here now.” (Yes, I’m telling him all of this with slurred speech and I couldn’t focus well, but I was sure about all of it.)
So he asked, if you were possibly dying what would you like to do before you die? The only thing I could really think of was to renew our vows. I told him somewhere near the water….a nice lake, or the beach, or a water fall (I bet that would make me dizzy though). He was all for it. He didn’t realize that I wanted to renew our vows so I could point out to him that they were until Death Do Us Part….and I wanted him to carry on without me.
Let me say right now, I DO NOT think I’m dying. (Well, no more than anyone else is.) But sometimes lately, I feel like I must be. My brain isn’t working quite right and that is the only thing that makes sense to me, but then again….my brain isn’t working right!!!
I have been in touch with both my psychologist and my psychiatrist….I’m making sure everyone is looking out after me through all of this because I know my brain isn’t working just right. One shouldn’t see things, or forget things, or not know where they are….it’s kind of freaky. I’m so grateful Stuart has the type of job he does so he can be with me all the time right now.
So I’m in a holding pattern right now…about everything
Right now, there are no good days. I may have some decent moments, but no completely good days. (I even told Dr. Gray that I feel like shit!) – actually Stuart was on the phone with her and she heard me in the background. I was trying to stop cursing, my therapist said, it’s probably not a good time for that. People under this much stress tend to feel better if they curse more. Alright!!! Stuart can no longer bitch at me for my language….but I am trying to tone it down..I do get a bit out of control….can you believe it? Me?
Titty Sling Update – I got too tired again trying on bras…and they let Stuart come in and help me, I’m sorry to all of you ladies who have to do it alone! Finally I begrudgingly picked one. I didn’t like it but it served the purpose. We walked out of the dressing room, and I pointed to a bra, and said, I wanted that one, but they were out of my size. Stuart looks up on the top rack…thank goodness he’s over 6′ tall!! and found one in my size. Once again I said, I’m just buying it! So we did. And it fits like a dream! I love it! But it’s white. ick. I can’t wear white with let’s say…..white. And it was on clearance – $9!!!! but no more in stock *sad pouty face*. We will be scouring other stores tomorrow to see if they have any left!
OH…when I was in the store, an employee, ran into my walker with her shopping cart TWICE! She was picking up clothes people put in the wrong place. She saw me, looked me in the eye, and bam! I have been hit! She said something I could not understand. The next time, same thing. I thought….I’m so glad this store will hire the mentally challenged. (Wow! a big difference from the $.02 that pissed me the other day huh?) I admit she did annoy me, but I just let it pass. The only thing that really bothered me was that she was also the lady who was in charge of the fitting room. I asked if Stuart could help me. Yes, but he had to leave his things outside. (his things were, his sweatshirt, and shopping bags – not store merchandise) He asked where, she mumbled something and pointed to a shopping cart full of stuff. Stuart said, “I wonder if I’ll see that stuff again?” We did, but we had to dig for it down in that shopping cart. How bizarre. But I really felt, mentally challenged, not just lazy like the $.02 lady…. I think that made a huge difference.
So…I’m scared, that’s normal right? I’m a bit off, somehow I have to hope they can make it better….somehow.
Going to start talking to doctors about disability, afraid about that too. If my doctors said they don’t think I’m disabled I think I’d fire them. Oh, I’d be wayyyyy too angry to speak. I know I’d have a break down right there. Yep! So I have an email to my therapist about how to talk to them about this before I actually do it. I’m way too touchy right now.
The new baby should be here no later than Thursday. (they are inducing if she doesn’t go into labor before then). I’ve barely seen the mama. She has been in the guest room with the door closed in the dark for most of the time. Chris has been around. It’s been kind of surreal. Especially with all the new stuff going on with me, and she was diagnosed with this same thing with the pregnancy, but she seems to just have the headaches. I deal with the headaches very well, I’ve been having migraines since I was 11. Poor Penelope has never been sick. This past 6 weeks has been hell on her I think. I hope things are easier after Rowen is born.
Forgive the look of the blog….I’m working on it. I’m still not there yet, but I’m playing. It’s hard to read a lot because things are blurry so forgive me if I don’t make it to your blog a lot, or if I have many misspellings. But the graphic stuff is kind of fun (if they would just tell me what size it needs to be)…I’m playing…It will turn into something we all love I hope!!
hugs to everyone who needs one today!
Picnic with Ants 
I think you’re the one who needs the hugs, lady!! That is scary. It’s one thing to deal with a chronic issue, but when it is shifting around on you and you don’t know what to expect that’s a lot more difficult and button pushing, to say the least. I am amazed and proud of you for not biting cart crashing woman’s head off. For your good behavior the universe granted you a decent bra that fit, even if it is white, that was on sale. 😉 Hang in there, sweetie!! Wish I could make it all better for you. Prayers and hugs! 🙂
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Yay to the Bra Gods!!! I’ve been trying hard not to be so judgmental lately. I used to be much more…hey, I might not agree with the way you live your life but if it works for you I’m happy for you. I had a lot of friends who did things I’d never think of doing. (or would never consider doing now that I’ve grown up! haha) I keep thinking, you are still behaving like this and you are raising children? But I can’t talk about this here. I’ve been blasted for my ideas and well, I simply don’t think because you can procreate that you should. It’s a huge responsibility. Be a parent first. That’s what you signed up to be when you became a parent. (soap box there huh?)
Thank you for the hug. Yeah, this is a curve ball, but I’ll either get around it, or throw it back! I’ll survive….and try to do it well. I may never work again. But hopefully, I can clean my house a bit. And do a little art. And have some fun.
Right now, my biggest fear….and I meant to say this in the post, is that I will die, and never feel any better. I know there are others out there worse than me who know they won’t feel better. But I am not ready to say that yet.
And tell me how can someone who is on a very high diuretic (2 different kinds) have swollen hands today? WTF? and woke up with a vertigo attack….I hate this damn shit. and I’ll say that probably 100 times today. I hate it! oh yes, I hate it! But, I’ll deal with it….not just one day at a time right now, but baby steps.
and my hug, included me. : ) love w
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I understand your fear! A few weeks ago, I thought I had developed a nasty side effect that could lead to death. There’s no need to apologize; keep speaking from your heart. Perhaps you should contact the folks who are in charge of the website — they might be able to offer advice and support.
Could your meds be some of the problem? I know several I take warn of blurry vision, but you’ve probably already thought of this.
And, preplanning what happens should you go is not strange to me — hubby and I have discussed for years what we want; we just haven’t communicated it to his family (as they would be the ones to take care of what he wants if I’m not there.
I like the new ant at the top of your blog — I’m always amazed at what art you are able to create dispite your health issues.
I hope you get to see those doctors, and that they have some answers. I’m sending you as many cotton-gentle (((((hugs))))) as I can, and healing vibes. I know others are doing the same.
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Oh I didn’t create the ants. It’s a free domain graphic….I will put up a blurb about the artist. I was going to but saw this and it cracked me up! But it needs more and I’m tired right now, so it will wait. it started out being something very different and I was going to overlay ants, but then I found out this graphic (that I found years ago and was afraid i was infringing on a copy write) was free to use…Yay! So I snapped it up. I’ll think of something, as I get over the learning curve of GIMP, do not have Photoshop right now. : (
We do have some plans written out, this was more spiteful planning. you know…I don’t want my father there or my sister or my niece…they don’t care enough to see me in…ummmm I don’t know how many years…NO they cannot say goodbye when I’m not there to tell them off!! So we have just recently put together our estate planning (sounds like we have so much) haha but it takes care of the pets…and such. And me if he goes first. In NC if you die without a will 1/2 of your assets go to your spouse 1/2 go to your parents…..is that not the stupidest thing? So … we have it written up just have to get the lawyer to sign it all and file it. Done! Yay! No one can argue over that. (we want a green burial…and I’m donating a lot of me to science, we just get to do whatever with what’s left.) I could see my family fighting that…yes the sister I haven’t seen in 8 years!!
So it was a bit over the top to be planning a rave for my send off that excluded people….but you know, I still like the idea….or no send off at all, just don’t tell them. Now that’s an idea. We just won’t tell them. How would they know?
hugs back to you. I’m pretty tough…unless you can’t handle it, I want a big bear hug….let me know someone is really there and cares! love w
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Oh honey bunches of oats!
I’m the one sending you love and hugs and everything good. If you feel like talking email me your phone number and I will call you. oh my, how scary for you and hubby. was this why you were sending me something? one day at a time, all your friends are here for you, ANYTIME. Wendy, take it slow and take deep breaths, a lot of what you are going through is SCARY, not going to lie but maybe you will feel better today. Do the things you have to do to make YOURSELF feel better. I am here, I have your back. Hugs and love and all good things to you, Love, Laurie
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Laurie, Oh my dear, I would send you my phone number, but I can’t talk on the phone very well. Sometimes a little, but if there is any background noise on either end I’m lost, and sometimes I’m lost anyway. Losing my hearing is a pain where telephones are concerned. We could do the CapTel…I talk, you hear, and talk back…I see it typed on my computer screen. Stuart said there’s a little delay, like about 2-3 seconds. So that could drive you crazy, but that is an option. I’d have to know exactly when you are are calling though….you could text me….so I can turn on the thing, you have to call a special number..or I can call you, that’s sometimes easier. : ) I’ve only used it with Stuart….so we could experiment.
I am trying to get out of the house each day. If possible, no matter how I feel. Today I did, and had a horrible experience. Someone screamed in the store I was in. I swear I almost went into shock. Started to shake all over, I fell against the shelves, I was so confused and almost threw up. I think my pressure spiked. She scared the mess out of me….all because someone won a basketball game. It was so unnerving. I tear up just thinking about it. That’s the first time I’ve taken a Valium just to calm down. When we got home we stopped and I felt like I was still moving and started to see double. Great!
We did have some good moments. We took the top off for a little while. Ate outside. Just spent time together in a place other than our bedroom. so a good time.
Oh, and NO that’s not why I’m sending you something….you’ll see….it’s funny. It’s all about a post you wrote. You will, I think, get a kick out of it. Should be in the mail this week….as soon as we can. It’s in the box! The card is written to go with it, just have to seal it up and get it to the Post Office. ha. That’s so very simple. have another one to send out to someone else….hint…Lorraine….because of a post she wrote, she wrote of something fondly I had it in a drawer, so I’m sending it to her….surprise! I love doing things like that. Especially to people to deserve it. People who have supported me so much.
love and hugs. Wendy
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Hugs back to you, Wendy. I can relate to so much of what you are going through. I just haven’t felt right since my lumbar puncture (when they drained my CSF)…first the low pressure, now the high pressure. I just feel awful. I’m holding off on the diamox for now – going in to talk to my doctor on Friday. I feel like my body is struggling with these fluctuations in pressure, and I really don’t want to do any more messing with it. On the other hand, my vestibular tests were so dramatically different when my pressure was lower that I can’t just ignore it either. Arrgh.
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Allison, I understand. Dr. Gray said she thinks I am very sensitive to fluctuations and that makes it harder.
It sounds like you are between a rock and a hard place too. I hope they can figure it out soon. I think of you daily. wendy
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Hugs, hugs and more loving hugs to you. I don’t know what else to say other than to just keep being you. Being scared is such a normal response but becoming informed is a perfect way to try and keep the fear in check.
I absolutely love the idea of having a party with a bouncer! We should all get a send-off where people are laughing and remembering the good and fun times. Although, I’m also up for the idea of having a party like that when you are still alive, able to enjoy the people who are there for you and to still have the bouncer at the door. Life is too short. You should be enjoying it with the people who mean the most to you. My mother used to say that when died, she didn’t want people buying flowers for her funeral. If you couldn’t bring them to her when she was alive and visit with her, don’t waste money and buy them when she was dead.
On a side note: one of the people I follow on Twitter said she bought a Kindle book today called “Excuse Me, My Brains Have Stepped Out”. It’s fiction but it’s about someone who has been diagnosed with IH. I don’t know how much casual reading you’re able to do at the moment but I got the book and, for the moment, it’s free. Don’t know if serendipity is at work here or not because I got it before I read this post. Sometimes you can get just as much out of a work of fiction as you can a non-fiction book. Here’s the link to Kindle http://www.amazon.com/gp/product/B006FOTWUO/ref=kinw_myk_ro_title and here’s what I found on her blog’s about page:
A bit more about your first novel Excuse Me, My Brains Have Stepped Out?
– Edited and compiled from some of the blog posts made at Peace from Pieces with many more newly added chapters it comes after a tremendously long trail of rejections, one VP shunt surgery, seven years of lumbar punctures, a very rare medical condition and the realisation that comes with getting your priorities in order. To say, I am thrilled to bits is truly an understatement. Read more about it here. View the book trailer here.
So, the book is fiction but based on her experiences. Like I said, serendipity.
Love and hugs,
Maureen
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Oh my gosh, I got goose bumps! I just downloaded the book! I’m looking forward to it! Yep, my next LP will be number 10…I’m telling them if I have to have another I expect it to be free…(I’m thinking about making up a fake punch card) hehehe When I get to the window I’ll ask them to punch my card….it’ll look like a Duke Neuroradiology card…with the circles around all punched but one. I’m going to really mess with someone’s head. Good!! hehehehe
I like the party idea for when I’m alive too, but the people I want to come live in my computer. Or are too ill to travel and live very far away…like in Canada. My mom didn’t want flowers at her funeral either. We had a donation fund. But some people sent these obnoxious things…I thought, oh you did not know my mother. I remember this woman walked in with a Bright Red Dress on, I clapped, and said, NOW YOU KNEW MY MOM!! It was a touching moment. But the biggest thing…I have family I don’t want to come. If you can’t come when I send you email after email telling you how hard this is on my husband, how I can’t drive….ect….ect…. Don’t come because I’m dead. I told Stuart, let’s just cheap out, and not tell anyone. We simply won’t have a funeral. He liked that. I said, you can have a few people over for you, but don’t put it in the paper, or call my family or anything.
But I’m here for a while I think….more suffering must be done. More penance to pay for something. (no I don’t believe that.)
Thank you so much about the book!!!! I’m so thrilled. I’ll read it as often as I can. I type a lot of this mostly blind. Things are blurry. But reading is harder, so I have to wait until I can see better.
love and hugs wendy
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Sounds ghastly! I can imagine being able to control myself with any old symptom EXCEPT my vision going grey and blurry! That’d be panic stations! Hugs to you, girl- the docs are NOT being wildly helpful, that’s for sure.
Re: shunts- I’ve known several adults who’ve had shunts and they’ve been almost miraculous. They hardly interfere with the brain when they insert them, so I wouldn’t be so against them myself.
Just make sure you make other people do stuff for you when you truly are disabled- it sounds as though you are, but people are still trying to treat you as if you’re perfectly OK! Bung it on- insist on help.
PS. It’s InTRAcranial hypertension: “intra” means totally inside your head; inTER cranial means between two or more heads! You haven’t got two heads have you?? Maybe it feels that way! Hang in there. Fingers & toes crossed they’ll sort you out soon.
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it can be a bit ghastly. Thank you for pointing out the spelling oops. My brain isn’t quite where it should be right now…kind of mushed. : )
People are only allowing me to do what I think I can. Just as the doctors said. Listen to my body and do what I can, so that’s what I’m doing.
I may over do now and then, but I’m not going to live in a bubble.
I was told today by my doctor that I would get an LP shunt if I got onw. You see I’m also going deaf and will need a cochlear implant in the not too distant future, we don’t want to drill in my head any more than necessary. (I’ve already had 2 ear surgeries that went to the dura, (this last one they were hoping would drain enough fluid so this would just go away, but it seeems to be worse)
And right now, I wish I often see double so who knows about the second head…but then, I do wish I had another one so I could just move into it and leave this messed up one behind.
Meniere’s was enough…now this….I just don’t like it. But I’ll deal with it.
It’s starting to be spring. the flowers are blooming, the sky is bloom, a friend is about to give birth….
it’s a good day.
I can over look the headaches and the tears. The dimmed vision and the movement when I’m not.
It’s a good day.
w
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Bless your heart. Again I must say that I have no clue about what you are going through and I wish I could offer better words of comfort to you. I would imagine that getting the diagnosis is scary and once it is accepted by you, perhaps you will find relief in finally “knowing” what is wrong. Information is both scary and empowering. I hope you find the empowerment soon dear friend.
When you thought you were dying, your description of how you felt and the terror really reminded me of a horribly severe panic attack. Do you believe that could be the case? I know that when you have a very serious panic attack you get a feeling of impending doom and feel that you are going to die. I have had these when I had myself convinced i had something wrong with my heart. Now I know you truly have health problems and I know that the fear of them can surely cause some serious anxiety.
My heart goes out to you. I am sending loving thoughts and prayers your way. ♥
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Muse, Thank you. I don’t think I was having a panic attack. Anxiety yes. But I was very calm. I’ve had Panic attacks, and I didn’t feel like this. It was just how it was. and possibly how it is. This can be fatal, especially from complications, but I don’t have to worry about that for a while yet. and everyone dies right? I have headaches today, don’t like that. Usually if I get my meds in on time my head doesn’t hurt as much, but I still have an hour before my meds are due and I’ve had a headache for about 2 hours already. Yuck. Don’t need the pressure on my brain….hey…brain….let some fluid out will ya?
I think you could understand more than you think. This is causing my moods to go a bit whacked. I asked my psych…am I crazy? She said, well, not crazier than you were before…and we had a big laugh.
have a marvelous day. wendy
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LOL, I like your Psych. Have to have a little humor ya know? Life is scary, I imagine more so with chronic illnesses. To be so calm and full of dread… maybe it was your minds way of reconciling what is happening with your body. Though we all die, I would like you to find some better health and do more living with your wonderful husband. 🙂 I really liked the way he responded to you. He didn’t tell you that you were crazy or being absurd… he listened. That is such a wonderful trait. For him to listen to something that he did not want to hear, very commendable.
Do you get migraine headaches?? I have uterus pain/problems. Just a cyst but boy does it cause me grief. The pain meds use to help but now I am thinking they are just making me feel ill. Perhaps a change in medicine is in order.
What can they do for the excess fluid??
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