Neglectful

I realize that if the act of keeping this blog were a relationship, I would have sent the dreaded Dear John letter ages ago. My visits to this place have been infrequent and the blog must feel neglected. Thankfully, when I look at my stats, my readers have not abandoned me. Thank you so much! 

Quick update since the last post: The poisonous steroids have been purged from my system. The side effects I was experiencing, aside from an increase in hip pain, have receded. After seeing the Neuro-Ophthalmologist, it was determined that I was experience migraines and seizure from the temporal lobe region – all a result of the hippocampal sclerosis. Now that I am back on the Topamax, or in the process of titrating up, the hope is that the medication will be a solution for both. 

Endometriosis Update: 

If you are unfamiliar with the previous posts regarding my recent adventures with the Mirena IUD, I suggest you read the following posts before reading this next section: Mirena Removal Time & Mirena Insertion/Optic Neuritis (you really only need to read the part regarding Mirena).

Roughly a little over 1 month lapsed between having the Mirena removed and having one reinserted. Unfortunately, this meant my cycle returned. Having read numerous e-mails over the years from Mirena users, I knew my chances of a period returning in the first month were a gamble. Some women had to start taking birth control pills to resume their cycles, while others began bleeding at the time of removal (which you will for a day or so – and this is normal) and not stop for weeks. I knew going into it that I knew enough to know not to expect anything. But I did get my period after 3 weeks, and while the pain wasn’t bad, the moods were miserable, and my dysautonomia couldn’t handle it. 

Now fast forward to a month post-insertion. I was seen yesterday for a work related visit and the nurse notes a low blood pressure, that I am pale, that my pulse is borderline. She recommends my hemoglobin is checked. I see no need for this, nor does the doctor, because the only period I’ve had in 5 years was only 7 days and wasn’t that heavy. 

Saturday morning finds me tired. (This whole week’s found me tired after sleeping 8-9 hours a night!) As the morning stretches on, I find myself growing weak from the inside out. I feel that I’m pulled down from the chest – as if someone has tethered a weight to my breastbone and dropped the lead down a bottomless shaft, and now I’m trailing behind it, blazing away, unable to stop as I fall. My head feels… feels… shaky. Or wobbly. Or messy. It’s heavy and it hurts, but it’s not a headache. And it’s not a migraine. 

The afternoon comes and moments of clarity slip in. I think this is just the Topamax. Welcome to the Topamax Trip, enjoy the ride! Then I go to the bathroom. Then I discover….that evil… little…”friend.” Just a little bit. Enough to ruin my day. 

So far it’s been a few spotting episodes, but I’m sure those were just scouting parties. The full out battle has yet to be seen. 

Regardless, feeling like this and then experiencing the painful realization that I am being charged for 2 Mirena’s + 2 doctor’s fees  + 2 surgical rooms = not very happy (especially if I’m going to pretty much be a mess every month even WITH THIS THING IN ME!!!)

Just when you think you have answers…

Now that I’ve had time to collect my thoughts, I wanted to update this blog on the current neurology madness hell I’ve been living in.

As previous posts stated, I was told I had retribulbar optic neuritis and sent on to my neurologist. After a nightmare involving misplaced test results, I went through craziness to get an MRI. The MRI didn’t show optic neuritis, but do to my symptoms increasing, it was ruled as such (called too early to show up on MRI) and I was started on a 3 day course of IV Solumedrol which was supposed to be followed by two weeks of tapering doses of oral prednisone.

Well, the steroids have spiked my blood sugar, given me a TERRIBLE sore throat, my legs are quivering and achy and crampy!! So, after hearing from my neurologist, I was told to stop the medicine cold turkey. I am worried about doing so because I have Hashimoto’s. How is this going to mess with my thyroid.

And it also leaves us with some major questions. What is causing the eye problem? The steroids helped my eye pain, but not the color saturation or blind spot. We have no idea now what is going on. And that scares me. Add to that this hippicampus sclerosis the MRI found. Yeah, I’m just livin’ it up now.

Too much stress. Too many questions. Too many side effects. Not enough answers.

Steroids! Make it stop!

I did not reliaze the treatment of IV Solumedrol and the tappering mega doses of Prednisone was going to be this bad!

Everything on me hurts. EVERYTHING. Bones. Muscles. Head. Throat.

I can’t stop crying or feeling like completely blah. Yes, there is no better way to describe it. I just want to be left alone. Don’t talk to me. Don’t look at me.

And silly me, thought I could venture into work. Miserable mistake resulting in me sitting in my office, the room darkened, unable to eat and completely irrational.

This process is INSANE!

Last Infusion

My last infusion of Solumedrol. I have terrible side effects from this stuff – flushing, hot flashes, weepy and irritable, upset stomach, lack of appetite, bone and muscle pain, insomnia, and headache. Have insane heartburn now, too.

Tomorrow I start my 2 week course of oral prednisone. Still high dose. The eye pain, though, is virtually gone. My vision hasn’t returned to normal, but I was told that could take some time. As long as the steroids help it to stop getting worse, I’m fine.

IV Solumedrol

This post isn’t going to be involved with fancy links. Perhaps once I’m better, I will go back and spruce it up. No promises. As always, you get what you get. 

The MRI went well and I was able complete it this time. The radiologist noted nothing of interest on my optic nerve, but the neurologist said this could still be optic neuritis and it’s just too small an attack to do anything. So he started me on IV Solumedrol for 3 days at 1 gram (or 1,000 micrograms). I will then take 60 mgs daily for 2 weeks before tapering off. We are hoping this will help lower the duration, and of course, prevent further loss of eye sight and color vision. 

While discussing the MRI, my doctor was alerted that the radiologist had more information for me. Apparently, given that this MRI was done in the super MRI tube, a flair occurred in my hippocampus. The radiologist went back and looked over years of MRI until he found one that showed a shadow over the same region. He then traced to see how the hippocampus has shrunk and now, withe awesome 3T MRI, it shows bright white. My neurologist said the radiologist said it was on par with epilepsy. 

I admitted to having absence seizures a few years ago. I’ve had other temporal lobe seizure symptoms over the years – and currently – that we’ve written off to dysautonomia. 

We are focusing on getting this eye mess taken care of first. Then when I see him in 2 months, I will be discussing this other stuff in depth. Currently, doing my research so I can come into the appointment with informed questions. 

Mirena Insertion/Optic Neuritis Saga

*This post will be in two parts. At this time, I would like to state that these experiences are my own. This post, and any other post on this site, are for educational purposes only and are not a substitute for medical care.* 

Mirena Insertion 

As readers of this blog know, last month I had my Mirena UID removed with the full-intent on having another one put in at the same appointment. The removal was uneventful, but problems with my dysautonomia halted the insertion of a new coil. After experiencing life with an active menstrual cycle again, I was determined to make the second attempt be a successful one.

Thankfully, today’s insertion was successful. Unfortunately, it hurt like labor, was complicated, and I’m still in pain!

The first time I had a Mirena inserted, I had absolutely no problems. It went smoothly and painlessly. It’s possible that this was due to having a cervix which vaguely remembered what labor and delivery felt like. Now, being some years from the last time I pushed a melon through a keyhole, my cervix prefers to remain nice and tightly closed.

This doesn’t translate well, though, for a Mirena insertion. The midwife was able to sound the uterus and cervix (using an medical device to determine uterine dimension prior to the placement of a UID), but when she would go to place the Mirena, the uterus would contract and she would have to abort. After three tries, she fetched a male midwife (he was EXCELLENT!) who was finally able to get it in. It still took him two more tries, though, and they had to pry my cervix open and clamp it in a way to keep it that way. If you think this sounds remotely painful, let me assure you that it was!

I am still cramping and had to resort to prescription strength pain medication within 30 minutes of the visit.  They are seeing me back in office in one month just to make sure things are okay. Seeing as this was second time with a Mirena, I had envisioned things would go a lot smoother.

Optic Neuritis

On my way to the office last week, I noticed an odd sharp pain when I blinked my eye. It was only in one eye and I thought something had gotten in there. When I got to work, I looked in the mirror, saw nothing, washed my eye out, and went along with my day trying to ignore it.

As the day progressed, the twinging sting progressed into a pain when I moved my eyes. I left work early, went home, and, thinking it was allergy or sinus related, took some antihistamines and went to bad with a rag on my eyes. The next morning, the pain was still there but now it encompassed my entire orbital area.

Decided to see the doctor and get antibiotics for the sinus infection I was 99% sure I had. Well, the doctor found no evidence of sinus or allergies, looked for a corneal abrasion, and, finding none, sent me straight to ophthalmology. There I was subjected to bizarre torture tests. One of which was to test my color saturation. The doctor held up a red cap and I quickly discovered the affected eye saw the cap three shades darker than it was. Now I was concerned.

We performed a Visual Field Test , in which I stared into a  dimly lit dome and clicked a button whenever I saw the light shine. I didn’t think much of this test when they were testing the affected eye, but when they switched to my “good eye”, I realized the other side had been darker. And the lights had been elongated and oddly colored. The test revealed some blind spot(s)s near the left side of my vision.

We then moved on to Visual Evoked Potential (VEP) test, in which electrodes were placed on my scalp, the room lights were dimmed, and I watched a television screen as a checkerboard pattern flashed and rotated while I focused on a circle that moved in the center of the screen. Frankly, this test was enough to give me a headache, but it showed the connection between my eyes and my brain was fine.

So what was going on?

The eye doctor said he suspected the beginning stages of retrobulbar optic neuritis. Test results were faxed to my neurologist,  and I was told to expect a prompt call from his office. They would know how best to proceed, but I was warned that this could be the beginning stages of multiple sclerosis. This is enough to just mess with you week, isn’t it? Since speaking with my neurologist, I was assured that we don’t know if it will in fact turn into MS, but seeing the VEP looked good, the odds are in my favor. My neurologist stressed that this can be caused by other thing, so thank you Eye Doctor for trying to ruffle my feathers.

Well, I waited for the doctor to call. It was late, I told myself, and he’s only in office on Thursdays. So when he didn’t call, I didn’t stress. Then on Friday, I phoned his office and the receptionist told me that if he was concerned, he would call me.

I didn’t hear anything, so that afternoon I phoned back and asked to just have the nurse call me. She returned my call 30 minutes before the office closed and was alarmed when I told her my concern. She immediately paged the doctor, who then called me at 5:20 p.m. (if you’ve ever had a doctor personally call you after hours, you know how I was just a bit freaked out). Apparently, the receptionist filed the paperwork in my file since I had an upcoming appointment anyway. She never alerted the nurse or the doctor, despite the seriousness!

My doctor has apologized over and over for this. And he is the best doctor I could ask for.

He instructed me to try some cold beverage or a cold shower and then told me to expect to have the visual field rerun on Monday. Also, expect an MRI of the optic nerve. When he called me back 10 minutes later, I was a surprised. He said we may try steroids, but with my other conditions, this could make things worse.  And the oral doses are really high, so I would have to go into hospital. But since the vision wasn’t getting worse, as far as I could tell, he was fine waiting until Monday.

While out shopping with the family Saturday morning, I get a voice mail from my doctor… and he left his personal cell phone number. Can you imagine my concern now?!?! Yep, I didn’t even want to call him back. I was freaked out beyond belief.

I did call him back, though, and, since the cold drink approach didn’t help the pain, he wanted me to go straight to hospital for an MRI. Now, the MRI is not my friend. I’m severely claustrophobic and the noise irritates my tinnitus. But I don’t have a choice. He doesn’t want to pursue high dose IV steroids if he doesn’t need to. In this situation, the MRI is the less of the two evils.

I make it to hospital only to find out that the reaction I had to the last MRI with contrast (headache, dizziness, nausea) is an allergic reaction. They are unable to do the MRI without me completing the allergy preparation that takes a day to do. After speaking with my doctor, we decide to send me home and repeated the visual field test on Monday. It is decided that I will get an MRI, but if the visual field has worsened, I will need to be admitted and given the IV steroid. None of this sounds fun to me.

So this morning, after getting the Mirena inserted, I endured the labor-pain-like cramps and retook the visual field test. The results were no better but no worse. No IV today, but lets get an MRI. This is an MRI he would like as soon a possible. Because I am allergic to contrast and claustrophobic, this has to be done in special circumstances. And we can’t get an appointment scheduled until later in the summer. I see him on Thursday for what was supposed to be a routine follow-up. I am fearful that he will want to pursue the IV steroids and not wait on the MRI.

Personally, I would like the pain to stop. Over all, it’s not severe. But when I get hot, it increases and can become really bad. Lukewarm baths for me.

I am now left to wait and see if it the vision or pain get worse. If either happens, I have to go in and get the IV – MRI or not.

Oh, I had no idea it would suck this bad!!

When I failed to get the Mirena reinserted, I had no idea the consequences that would cause.

I knew there was a chance my period would return. Yes, of course, I know how these things work. Remove the constant stream of hormones, uterine lining rebuilds, you get a menstrual cycle. Easy. I can handle one of those, right? How back could just one be, after all, I had skipped 5 years worth and one couldn’t be that bad, and it was highly unlikely that gobs of endometriosis would spring up and attack my pelvic organs in one measly little month.

What I failed to consider, though, was the other reason the Mirena and it’s constant stream of period-stopping hormones were so important for my daily function – dysautonomia.

Like so many other women, my dysautonomia is aggravated by the hormonal fluctuations and mineral loss a menstrual cycle brings.

Monday, while working, I went to grab my lunch and head to the break room. It was when I turned to grab my Kindle that I dropped to the ground. My heart was skipping furiously, I could not breath. I was suddenly so weak I couldn’t move from the floor. I sat there for ten minutes, until a co-worker came by and noticed me. Thinking I needed to eat, that somehow that would make me feel better, I had this person ready my food and sit with me while I ate it. After doing so, the dizziness wasn’t as strong so I tried standing. Immediately, I dropped once again and my husband was phoned. It was bad. So bad that I had to be wheeled to the car.

I got home, managed to hang on to my poor husband as he carried me into the house, and I slept all afternoon and half of the evening. I felt so exhausted. I needed help getting to the bathroom and couldn’t take care of myself.

Yesterday, I was slightly better but not 100%. I awoke. I went to the bathroom. There I discovered why the dysautonomia – which I’ve been dealing with since July! – was suddenly so bad: my period.

I’m on day 2 and I’m still exhausted. The cramping isn’t terrible (I fear, though, that now I’ve said so it will become bad!). No mood swings or cravings. Actually, my appetite is rather non-existent. The feeling-full-with-very-little-food side effect of dysautonomia has kicked in big time.

The Mirena reinsertion is being attempted again on Monday. I’m hoping my BP doesn’t drop too much so they can get it in. I’m going to instruct them to force the bugger in even if I’m blacked out. I don’t care.