Hello everyone! It's been a long time since I've been here. But rest assured that whenever this thing called "Life with Chiari" get's to be too much, I come to you all.

So a short version of my history. Dx with Chiari 1 with a 5mm herniation 2006, Pseudo Tumor Cerebri in 2004. NOT decompressed. Symptoms are headaches, major dizziness, occasional palpitations, periodic numbness and tingling in extremities, motion sickness, neck pain and a few others, but those are the main ones. I do not take any medication for my Chiari, but I have been on a beta blocker (Nadalol) 20 mg for about 8 years because my Neuro put me on it for headaches before the chiari dx. Well now my heart is used to it so when I miss a dose I go into a full blown racing heart panic attack thing. (SO I don't miss doses, lol) But last year my cardio lowered my dose of the beta blocker to a 10 mg dose (which I have to now cut my pill in half because it's the lowest dose available).

ANYWAY, I've since been having new issues/symptoms and I feel like I'm losing my mind. I am at my whits end and don't know what to do next. My new symptoms are:
-- Ear fullness and a thumping in my ears (especially my left one) when I lay down that started about 3 months ago. When I have the fullness I have SUPER dizzy.
-- SUPER noise sensitivity. When I am in a group of people and there is a lot of back round noise I feel as though I am going to literally go nuts. It make me dizzy and then a fullness will come into my head and ears. It is horrific and very scary. This started about 2.5 months ago.
-- And my most recent and very scary symptom is an increased heart rate with the SLIGHTEST activity. I mean from getting up and walking from one room to another it changes like 25-35 beats per minute. This started 3-4 weeks ago. Since then, I've had SEVERE palpitations for over a week, it's the longest I've ever had them. And it happens with any kind of exertion. Like bending over or standing up.

I have not felt myself for the last few months. Anyone who knows me knows me as the life of the party, and even the few times I've forced myself to meet up with friends I end up staying an hour and coming right home and getting in bed. It's debilitating and scary. And everyone is starting to notice that something isn't right with me. It probably looks like depression to most. But if I am depressed or have been down it's ONLY because of these symptoms. I'm afraid to do anything. I only feel safe in my bed.

I should also back up a bit and let everyone know that at the end of July (a month into a fitness training to lose weight) I fell off my elliptical machine and my left leg fell in between the two pedals and got smashed in between them. My whole lower leg turned black and purple and I had 3 doublers done to make sure there were no blood clots (because I do have a high factor 8 and clot easily). I had been going to physical therapy for a few months because of continued pain and swelling just below the knee. They've been treating me for lymphedema and I now wear a custom fitted compression garment and probably will for the rest of my life. So THAT has been a royal pain in the you know what, and has really brought me down.

I know that this is a super long post and that it contains a lot of info. I just don't know what doctor to tell what to and which one to see next. I have a neurologist that I'm not happy with because her answer to everything is "Have the surgery". I just feel like there is something else going on here. I just called and asked the secretary to make a copy of my medical file so that I can start keeping a good record of everything. I'm not aware of a neurologist in the Pittsburgh area that TREATS Chiari and it's sister maladies. I want a doctor to work with me in finding the issues not push pills and surgery. Any suggestions? ANYONE!?!?!?

Nobody has anything to say? No helpful words of encouragement? 60 views but no replies? Maybe I am alone and losing it. I know every one of you has aches and pains too. And that life as a Chiarian can be debilitating at times. Maybe these symptoms I'm having aren't Chiari related.

Hi
do remember that views are anyone on the Internet reading this, not just registered members...it also includes the search bots from Google etc

In addition, it is a 3 day holiday weekend and so less members online

hope you get the answers you are looking for

Thank you for pointing that out. I'm just hurting and was anxious for answers.

I understand what you are going through, I am 19 and had chiari malformation surgery last year for 18mm brain leakage. You are not alone. I had the surgery and it has definitely helped me so much. In my opinion, the surgery would benefit you in the long run. Why put up with the pain more than you have to? Look for the positive in the situation, the surgery pains only last for up to 3 months, longer if you heal slowly. I recovered in 2. My pains were the same as yours, EXTREME headaches, nausea, dizziness,and loss of balance. I almost died for the leakage could have been punctured by my spinal canal, i was lucky. I hope you find relief soon. I wish you luck and will keep you in my Prayers.

Thank you for the kind comforting words! I'm trying to hang in there. I hope you are doing well.