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Hi, my name is Kir. I am so shocked to even be here right now. I was told about the website and book by a friend who is a member. She and I chat several times a week, as she is sick too. We share ideas, notes, research, and so on. Long story short, tonight we were chatting and she brought up CSF, because I have been dealing with chronic neck pain and recent headaches. I also Epstein-Barr, MTHFR, clotting disorder, asthma, reflux, vagus nerve episodes, adrenal fatigue, past and possibly present heavy metal issues, supposed Lyme disease, leaky gut syndrome, mysterious facial indentations, mycoplasma pneumonae, bursitis, knees constantly dislocating, arthritis in hands, double vision and pelvic instability, non-stop tinnitus (for over a decade now), with bouts of pulse synchronus tinnitus, recent low iodine and iron, past, possibly present parasites, and am about to be tested for Pyroluria. My ND thinks I may have POTS, but it is not constant. Cannot tolerate exercise at all.
I have been sick for almost two decades. It started at 25. I was engaged to someone my parents didn’t like. Out of nowhere, literally overnight, I developed severe anxiety and panic disorder and had something akin to a nervous breakdown. I got myself out of it with therapy and temporary Klonopin. I had a good three years. In 1996 I had my gallbladder out, felt great immediately and a short time later, I was literally fine one moment and then the next, completely on death’s door. It started out with horrendous leg pain. I also was having major muscle twitching, in which you can see my skin sink in and out all over my calves, like fireworks going off. Two weeks later, my digestion went, and then my hair started falling out, leg pain turned into pain all over my body, I lost 100 lbs. in three months, and essentially every system in my body started failing. I was so weak, I couldn’t even bathe myself and needed to be held up to even walk. I had to move back home.
I have seen countless so called specialists, doctors, ND’s, and nothing has worked to cure my current health problems. Now here’s the clincher. I have had three bouts of Papilledema/Pseudo-tumor cerebre. My former neurologist said one reoccurance is extremely rare, but three is unheard of. So when my friend and I were chatting tonight, she and I started putting two and two together and it was like this light bulb went off. The last few weeks I have been worried that I could be on a fourth round of Papilledema, as my weight has been steadily climbing again (my metabolism is nearly non-existent). My neck and head hurt differently than my regular neck pain and I don’t normally have headaches. When I had Pap the first time, I did go the Diamox route with weight loss and it went into remission. This was before I exhibited any current health problems. The second time it hit, I was already having my current health problems, and I supposedly sent it into remission with weight liss alone. I am wondering now if when I lost all the weight before, if I still had the Intracranial hypertension, even though I was told my Pap was gone. Perhaps that is why I have never been able to get well. Incidentally, I was having a lymphatic massage several months ago, and the massage therapist asked me if I had EDS. I didn’t know what it was at the time. I asked her why she thought I had it and she said she was moving my arms in ways that the average person could not tolerste and zi didn’t even flinch. However I asked a chiropractor about it, and he didn’t think I had it.
I have a great ND but obviously she is not a Papilledema specialist I live in So. California, near Pasadena, Burbank, etc. Can anyone recommend a neurologist or Papilledema specialist near me, who understands the Driscoll Theory? Thanks for any recommendations. Scared but hopeful!
Kir
Hi Kir, Welcome to the forum! You are certainly in the right place. Although I don’t know of a doctor to recommend to you, I had a couple of thoughts. One, I have experienced every single symptom you describe, as have many others. You are NOT alone. In The Driscoll Theory book, I describe what doctors already understand about high intracranial pressure — we don’t always exhibit papilledema. Knowing this, a doctor can either treat you (with Diamox) as a “idiopathic intracranial hypertension without papilledema” patient based on symptoms, or perform an LP to prove that your pressure is high prior to treatment. I’m trying to raise awareness about the dangers of LP’s in those of us with connective tissue disorders (they often end up leaking chronically). References and explanation is in the book — I hope it helps you get the treatment you need with a minimum of invasive procedures. 😉 Please keep us posted!
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