**Re-blog of an older story that got deleted when my site crashed**
I have an appointment today with my neuro ophthalmologist. I haven’t been since November 2015, because my nerves could no longer handle being examined for hours at a time, on a monthly basis. Especially after my last appointment went for 4-5 hours and I lost it to the point of running out of there (anxiety).
I have Idiopathic Intracranial Hypertension (IIH), also known as Pseudotumor Cerebri.
I was diagnosed with this in May 2015, after a series of tests, MRIs, and visits to multiple specialists.
Pseudotumor cerebri (SOO-doe-too-mur SER-uh-bry) occurs when the pressure inside your skull (intracranial pressure) increases for no obvious reason.
Symptoms mimic those of a brain tumor, but no tumor is present. Pseudotumor cerebri can occur in children and adults, but it’s most common in women of childbearing age who are obese.
When no underlying cause for the increased intracranial pressure can be discovered, pseudotumor cerebri may also be called idiopathic intracranial hypertension.
The increased intracranial pressure associated with pseudotumor cerebri can cause swelling of the optic nerve and result in vision loss. Medications often can reduce this pressure, but in some cases, surgery is necessary. – Mayo Clinic
In February  what started out as me going to a Lens Crafters, for a pair of prescription Ray Bans (that my eye doctor of 25 years didn’t carry) turned what was to be a fun shopping trip upside down…
I go to my eye doctor annually. Have done this since I received my first pair of glasses, in the first grade. I usually have my eyes examined, pick out a pair of new frames, a 6 month supply of contacts, and go on my way. I always go with the full exam -pupil dilatation and all. I had never had any reason to worry, until this appointment. I had my pupils dilated and the doctor said she noticed an abnormality that could be something, but may not be anything to worry about at all.
I was asked if I had been experiencing any headaches. I had. I had been dealing with headaches for the past year before that appointment, however my primary care physician just figured that it was due to my allergies. So I had been on two different types of allergy medication to try to help the symptoms as well as taking prescription Aleve. The headaches had gotten a lot worse a few weeks before my eye exam to the point that I had to leave work and sit in a dark room. Once again, I just assumed it was my allergies and left it alone.
She informed me that she would like to refer me to a specialist to have a better look at things. I still placed my order for my new frames, and the funny part is that my vision had improved since my appointment a year prior.
Fast forward two weeks…
I go in for my appointment with a doctor that specializes in the treatment and surgery for eye diseases. Both of my parents decided to tag along and we weren’t thinking anything would come out of this appointment. This office literally performed the same type of exam as the doctor at Lens Crafters, however with this doctor being a specialist, he determined there was definitely an issue and it wasn’t something that a course of eye drops would resolve.
I was scheduled for some tests and an MRI to check for a brain tumor. I still didn’t think anything of the “brain tumor” possibility. I was more concerned about being put in an MRI! Let me take a moment to explain how traumatic the MRI is for me. I had one years ago for my knee and had a serious panic attack, after feeling claustrophobic. I thought I stopped breathing and the damn music playing made it 10x worse! I did a lot better with this one, but couldn’t go through the full 30 minutes. They were able to get enough out of what they had.
My doctor received the results, which were good, there was no sign of a brain tumor, however I still had an abnormality that needed care. I was now being referred to a Neuro Ophthalmologist, for swelling of my optic nerves. This specialist (#3), did the same exam as the prior 2 and found THE SAME THING. I was sent in for a lumbar puncture (spinal tap), which was no joke! It may have made me feel more panicky than the MRI.
I had to have it done with X-ray, so they had me on a table, tilted up, which made me feel like I was sliding down, with a huge needle in my spine! I had to remain completely still for 40 minutes! I was afraid to breathe in and even blink! Spinal fluid comes out like crystal clear, molasses. It’s not quick at all. They had to fill up a couple of vials.
The results came back that I had Pseudotumor Cerebri. At the time, I had gained a lot of weight over the previous 3 years and it could have been what triggered the condition, but also could have come from use of antibiotics in the past. We didn’t know for sure, but I was told weight loss would help, but I would need to be placed on medication to reduce the swelling. The condition has to be controlled, because it can lead to blindness. My swelling was so bad, I was placed on the final and most potent of the drugs available for this.
Diamox (Acetazolamide). It’s a diuretic used to treat glaucoma, epilepsy, mountain sickness, and fluid retention (edema).
The medicine can cause some nasty side effects and you have to be monitored monthly with doctor visits and blood work. It can cause loss of bone marrow as well. This all was so sudden, but I took it and did what I was supposed to do for months, until I started not feeling great.
The medicine initially made me very drowsy, to the point I was missing work and had to go on FMLA. I also developed serious back and knee pains, though my blood work always came back normal. I even started feeling kind of anxious. I expressed my concerns to the specialist, but he turned a blind eye (no pun) and just told me to lower my dosage. The anxiety and pains grew. I ended up speaking with my primary care physician who felt it could be the Diamox. I explained that the anxiety made me more worried that the pain, because it was affecting me at work and making me feel uneasy.
I was given Zoloft to try to combat the anxiety, but it didn’t react well with my body and I had the absolute worst panic attack of my life, after 5 days on this pill. The attack left me traumatized and completely kept me from work. I ended up on short-term disability and stuck paranoid about having another attack. Meanwhile, I’m still on the Diamox, in pain and now anxious, stressed, sick to my stomach to the point that I stopped eating for days.
I started losing massive amounts of weight at a time and by December of 2015 I had lost 60 pounds in 4 months! After a few months, my appetite returned and the panic wasn’t as bad if there at all. I still had some anxiety, but I was healing. I’m now almost 90 pounds smaller.
I quit my Diamox cold turkey, back in October . I experienced a rough 2 months afterwards. Severe head pressure and dizziness. Around the end of November, I started feeling a lot better, and a lot calmer. Since then I have also stopped all prescription medications that I was taking (allergy and reflux pills). I have felt a lot of my anxiety and panic start to fade.
I truly believe the Diamox in combination with other medicines caused me to experience panic attacks and anxiety. They were debilitating and made my past year hell! As mentioned in prior blogs, I even left my job! I’m now going back to my specialist, after a year to find out if I am cured. Hell, I’ve lost the weight and a year of my life, something has to give, right?
I’m sitting here in bed, feeling anxious. I don’t know if it’s normal anxiety, or dread from this appointment. My tummy is in knots and I can’t rest. I have been feeling like this for days leading up to now. I prayed this morning that I can sit through my 2-3 hour appointment, without running out. That I can sit through my tests, and finally that I receive good news.
I don’t ever want to be forced to take medication for an extended period of time again. I don’t think that the way my body is setup, it can handle different types of medicines. I now know that I am prone to anxiety and panic attacks, so I will work my hardest to take better care of myself.
If you are experiencing headaches that last for extended periods of time, make an appointment with BOTH your primary care physician, as well as your eye doctor. Don’t continue to self medicate and diagnose yourself.