I thought that I would give an update on my journey toward seeing if I have Pseudo Tumor Cerebri.
Quick back story....I was one of the lucky ones who, after having the Mirena inserted, I lost most of my vision in my right eye (within the first couple of months). I went from great vision to legally blind in that eye (20/80 vision) virtually overnight. Anyway, after seeing the connection between Mirena and Pseudo Tumor Cerebri, I thought that I'd better make sure that wasn't something that I was dealing with (since it can back you go permanently blind if not treated).
After researching it, it seemed like I needed to see a specialist called a Neuro-Opthamologist to accurately diagnose it. I also read that it was diagnosed via MRI and spinal tap results (Quick description: Pseudo Tumor Cerebri is when there is too much cerebral spinal fluid in your head, and it can crush the optic nerve from behind, causing blindness). I wasn't looking forward to a lumbar puncture, but I was willing to go there to find out.
After contacting a neuro-opthamologist, I learned that I had to have my Opthamologist send my information to him to be "accepted". I set up an appointment with her so that I could explain what I was trying to do.
At my Opthamology appointment, I was told that she firmly believed that I would be wasting my time getting checked for this...for two reasons: Number one, I was showing no signs of Optic Neuritis (a swelling of the optic nerve), and I was showing no signs of Papilledema (not sure if that spelling is correct). That is, I thnk, when there are signs of too much space behind the eye, etc. She said that, if a person has PTC, they almost always show signs in one of those two areas.
So....that is as far as I got. In her opinion, I don't show any signs of having it, and she says that, with the extent of vision loss that I experienced, I would if that is what caused it.
I guess I am at the point where I just have to accept the blindness in that eye and move on with my life and making the adjustments necessary to live with it. I'm sick of the glasses--mainly because every time I take them off, I literally become nauseous due to the extreme difference between both eyes--they start fighting one another, and it makes me dizzy and sick to my stomach. I don't' have the money for Lasik surgery (nor do I know if I even qualify for it....I don't see the point in doing to the consultation to see if I qualify when I know that I can't even pay for it. So, on Wednesday, I am going to be fitted for contact lenses so that I have something in my eyes all day to keep my eyes "equal". Hopefully, that will help....and I'm hoping that--one day--I will be able to do the Lasik surgery on that right eye so that I can see again from it. Fingers crossed.
As frustrating as this is, I am at 17 months post removal, and--overall--I am doing so much better that I am beyond grateful. I think about where I was a year ago, and it still makes me cringe. I remember praying that it wasn't going to be my last Christmas with my family and wondering how I was going to have that conversation with my husband....what we were going to do to plan for the worst-case scenario of mom no longer being in the picture (because I would either be gone or so mentally gone that I couldn't function). Remembering that, I will accept the blindness in that eye as something frustrating and unfair...but something as as "hiccup" in my otherwise much healthier and happier life. What else can you do, right? Dust yourself off and move forward....we know that all too well, don't we?
I hope that explains my latest process clearly enough. I am still praying for all of you, and keep fighting.....I can tell you that I still feel myself getting better and better as each month passes. It's been hard (I've never taken so many supplements in my life! Ha ha), and it has been frustrating, but it is moving in the right direction....and I choose to focus on that.
I've been wondering about your PTC quest, and it's great to have that info. I really appreciate your attitude in your post (you've always had an inspiring attitude!). I've had a rough week with this period, especially after it ended 3 days ago. Since it stopped, I've had a resurgence of symptoms I haven't really had for 9 months: partial numbness in my right arm and leg, severe leg/body restlessness at night, heart palps, tingling in my forearms and brain, some twitching, very spacey head (carbonated brain ;). I guess this is a setback, but truly I'd had a very long time of feeling good. I have to look at it as improvement when my good times last longer than the bad. I guess I got complacent and forgot about the nasty symptoms (which were getting so much more mild). Amazing how it can flare up again. I find myself worrying about having a chronic disease (maybe it ISN'T the Mirena after all), but I know that silly. I laugh at myself for worrying in some respects and trust that it will get better after I get past this post-period time and the coming ovulation.
Thank you for the compliment. You are so inspiring as well. You are always so great at, even after all this time since you started, keeping up with responding to everyone's posts and giving encouragement. I'm at 17 months post now, and I remember being the new one....and hoping to see posts from people as far along as we are. I just NEEDED to know what to expect. It's crazy how it is so different for everyone, though.
As far as the occasional wondering if it really is the Mirena...I did it, too. When I have an "off" day, it is amazing how much that fear creeps back in so fast, huh? It is so nice to at least be able to know that the bad time will go away again. That is what was so terrifying for me when this all started and I was so sick every single day. I never knew if it was ever going to end, and the thought that this was possibly going to be my new daily life was unimaginable and horrific. I'm just so happy to know now that--yes, those off days may still creep in there--but if I dig in my heels and ball up my fists through them, I know that better days are coming again. That has taken that overwhelming fear out of it, and for that I am so grateful.
I can't even begin to tell you how much I wish we all could meet one day. What a bawl-fest that would be! Lots of understanding hugs for sure.
What symptoms are you still dealing with consistently? What are you taking to try to help?
You know, just thinking about meeting people on this forum at a group gathering makes me get teary! What empathy and understanding we would share immediately.
I would say that the main problems I still have consistently are a shakiness in my hands (like a tremor I see when I'm reaching for something - not a resting tremor); a feeling of lack of coordination sometimes when I'm moving around quickly; a feeling of pressure in my head that's sensitive to certain lighting and that makes my vision feel "tweaked" somehow, though not exactly blurry; brain fog (but better than it used to be); some trouble sleeping at night (sometimes it's getting to sleep, sometimes getting back to sleep after waking); mild hair loss (it stops as long I use the Bosley products); lately, I've had A LOT of trouble finding the right word to say when I'm talking. Here's a classic example: I told my son to put a book on the table, but I said to put it in the stove. I seem to substitute random nouns and verbs for the ones I want to use. And sometimes I can't get a word out - I know what I'm trying to say, like "purse" but I have to picture the item and then imagine the word spelled out, and then I can say it.
My occasional symptoms, which used to be more severe and every day, are twitching, tingling, muscle weakness/partial numbness (right side), dizziness, dry eyes, major hair loss, fatigue, rushing feeling in my head (like when you hyperventilate),anxiety, restless legs, nightmares, heart palps, itchy skin, itchy/sore scalp. There are probably some others if I think about it. I think I've forgotten some of them because they don't bother me anymore.
I noticed a real improvement in my issues when I started exercising more regularly and harder last summer. It's like it affects my body chemistry somehow.
When I first posted on this thread, I was having a rough time - a crash I could call it - rougher than I'd had in a while. I don't know why. I just know that I started that period a week late, which has never happened in my 2 1/2 since removal.
I too have problems with speech!!! I say crazy things although I know what I want to say....I too have what I call a brain freeze can't think about what I want to say unless I get a visual mental picture of what I need to say. I also have a tightness in my jaw, my head and my fingers. Fingers swell with water retention. Wow glad to hear someone else has expirenced it speech problems. I need to exercise but feel too exhausted to the point I get breathless.
I too am glad to know I'm not alone with the speech thing. Everyone says it's because I have 4 kids and am so busy, but it really wasn't an issue for me until I started my general reaction to the IUD.
I also felt too exhausted to exercise for a long time. I was pushed into it unwillingly when we moved to a new home last summer. The house we were moving into needed to be scoured (I'm a clean freak), and I only had a couple days to do it. I pushed myself beyond my limits considerably. I had no choice. I felt awful by the end of each day. But, to my honest surprise, it didn't kill me!!! Then we had to move in. My husband was swamped with work, and my kids and I moved most of our stuff ourselves with our minivan. Like 20 loads a day for a few days. We would pack it, load and unload it, and unpack it and go back for more. We have a lot of stuff, so it was brutal. I was aching and sore from the exertion at night. I would never have pushed myself like that, but I had to do it; we had a deadline to get out of our rental. What was amazing was that I was able to keep doing this over the course of a week. Then there was the settling for a few weeks after which was also grueling.
But I felt better than I had in months by the end of all of this! I could tell I was much stronger. My general muscle weakness was much improved, and the numbness wasn't bothering me as much. I even had my period during the main moving week. After some time of settling back down to my normal activity level, which was much lower than it was during moving week, I started not feeling as well. So I pushed myself into jogging a couple times a week (it was mostly walking at first) and fairly quickly increased my endurance. I could tell that the exercise made me feel generally better.
It seems counter-intuitive to do this because my general housework is enough to make me tired every day. I'm not saying that it's wise to push yourself, and every woman has to judge what is best for her, but I'm GLAD I was pushed into it with our move last summer. I don't think I was ready for it until then however. I'm quite convinced that a move during my first year post removal would have done me in for sure.
Sorry to hijack this thread and change the subject completely!
You know, I wonder how much exercise has made a difference for me as well. I was exercising very regularly (running mainly) up until about three months ago, and then I developed a neuroma in my foot...so needless to say that I am not moving much. I can also say that I have felt more symptoms, etc. lately that I had been. I wonder if it is tied to the fact that I can't get out and exercise right now. Hmmmmm...something to ponder.
From the acupuncture point, there are several striking things.
The mechanism Mirena acts:
--- increases the viscosity of cervical mucus
--- suppresses ovulation
Head and everything there is at polar location to reproductive system so one can expect organs there to be affected by any unnatural process in reproductive system.
Increasing the viscosity of cervical mucus is growth of Yin
and the same for suppression of ovulation.
The symptomes like:
--- vision loss
--- speech dificulties
--- headaches
all are Yin syndromes.
As for eyes, the path to eyes in energies:
[Burn--->Wind---Burn (eyes)]--->Darkness (optical nerve, from structural point of view)
Reproductive system is generally controlled by energy of Darkness - ultimate Yin.
Ovaries: Darkness (reproductive system)--->Darkness (ovaries)
so it's just logical, if there's troubles in general Darkness energy, one may have the same energy affected in
eye if it suffers.
More:
--- increasing the viscosity of cervical mucus means
growing Dampness energy
--- Pseudo Tumor Cerebri, too much cerebral spinal fluid in head, is harmful Dampness energy
--- Dampness energy is also SWELLING, so if located in optical nerve (Darkness) - there are true parallels to
the situation.
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My update on the pseudo turnor cerebri 
