12 BIZARRE ARACHNOIDITIS & CSF PRESSURE SYMPTOMS: Including my Covid and holiday flight experiences

You describe the symptoms perfectly. I feel almost exactly the same, its uncanny to watch. Except I have to sit reclined as opposed to bolt upright, and I don't feel better walking long distances. But pretty much identical in all other aspects. Its exhausting. Thanks for sharing and educating others 🙏

Thank you for sharing. I’m sorry you have to suffer with this horrible illness. I’ve had AA for 12 years now and have many of the same symptoms. I always tell my wife I feel off in my head and have pressure behind my eyes and in my head. Almost always with blurry vision and have that drunk feeling.

Hi Becky, it is so great that you are able to share how AA effects you. I have had such a hard time to explain to doctors, disability claims examiners and friends how I feel and what I live with. So often, I don;t know where to begin because its hard to put my thoughts together to explain. I could only add that I often feel compelled to get on the ground, even out in public, and start stretching or doing the Yoga position "Child's Pose"., as it helps to release pain and tension from my spine which I am desperate to do, especially if I am too tired to walk around, I hope that you have a good day today. Carl

Hi Becky! I feel as if I just had a conversation with myself! You have described your symptoms as well as mine to a tee. I have been dealing and trying to manage this for 8 years. Good days and some really unwell days. I’ve been diagnosed with high pressure and use diamox to help. I see dr. Linda Gray-Leithe at Duke University Hospital. At times I do feel like I go into low pressure but no leak found. Thanks for your video. It helps to hear others in the same situation. I am 63 years young!

You explained the symptoms perfectly. I’ve had AA for 38 years from an epidural during childbirth. My life was destroyed. Now in my mid 50’s it’s getting soo much worse I don’t think I can handle it much longer

Hi Becky. I can identify with almost all of those symptoms and have been 'drunk' for over 20 years now but having watched your videos, all of a sudden I don't feel alone or a freak anymore. You're amazing. Thank you.

Hi- Thanks. You make me feel not so alone. It is hard to find the proper words to describe this thing. Your information really helps. A phrase I have used is "level of severity". As I have progressed it feels like a new increased level. Fortunately sometimes it can go the other way. But these levels describe a whole magnitude of difference with conditions and symptoms. Many people do not understand this. I'm in my 26th year of dealing with severe symptoms. Learning to prevent neuro-inflammation and promote neuro-regeneration was a key for me. We all must find the way that is right for us to achieve both. Using frequencies of sound and light have helped me tremendously. Blessings!

Thank you for the work you have done with your videos and for sharing your story with us. I find myself in many of the symptoms you describe and could even list more. Yes, sometimes you can't find the words to describe these strange feelings. My hands are also very badly affected; numb, cold, immobile. I hope that my forthcoming operation with Prof. Warnke in Germany will bring relief. I wish you all the best and perseverance.

Hi Becky, great information here. I’m going to send an article via pm messenger on the Filum Terminale. We ( with Forest ) are currently studying this. Thank you for all you are doing to help others.

OMG! Thank you for all this info. I have been suffering with something like this for 5 yrs now and even the Drs look at me weird. I have a double fusion in low back and also have degenerative disc disease in my neck with a lot of pain. My vision gets bad and I cant even begin to explain the symptoms but fullness in my head is one of them. Headaches is another. I do have an arachnoid cyst in my brain but Drs do not think its a problem. Hopefully with all of the symptoms you list I can share them with my Dr. Its really very difficult to live a life like this, dizzy, brain fog, memory problems, etc. I feel my whole life is very difficult and Ive become a anti social and really dont have a life anymore. This is my late husbands computer, my name is Judith. Over the last 20 yrs I have been poked in the spine many times...I am probably leaking. These more intense symptoms only came on about 5 yrs ago, and perhaps all the testing has caused how distorted my brain is now. Vision is so disturbed, my visual horizon is so crooked that I have to immediately look down because my eyes wont align the horizon properly and it causes nausea and more dizziness mostly looking outward across a parking lot or field.

You describe everything so well. You deal with exactly the same symptoms I deal with…positional, symptoms or feelings etc. I also have a large brain cyst that I had fenestrated in ‘05 and a shunt put in. So I already had CSF flow issues but they were basically resolved until I developed AA a year ago after an infection and immune response reaction that attacked my spine. The AA has brought about the old CSF flow symptoms. They’re awful. They get worse at different times, especially sitting too long or standing too long. My lumbar spine has an area of dilation and a tarlov cyst. I feel the different areas of the spine where it feels like the CSF flow doesn’t feel normal. I can’t walk too much at all. I get light headed and that strange dizziness. I feel like I could just collapse. It’s scary. AA is a horrible disease that brings on so many different symptoms. You’re constantly trying to analyze yourself and what’s going on with your body, then adjust yourself or position or activity, to accommodate the symptoms. Thank you for your videos. It’s good to know we’re not alone.

Hello Becky! I'm dealing with Arachnoiditis since 2020 summer after an ESI. Despite my case is mild compared to other people i know who are dealing with this terrible disease, i still have many symptoms. I share some of your symptoms you mention in your video. The one especially strikes me is this drunken feeling. It has started 5 months after my initial injury and never left me to this day. It's really really hard to desribe. As you said it's not vertigo or spinning room kind a feeling. I'm able to walk without any balance issues but my head feels as if i drank a glass of wine all the time. For me, severity changes depending on the weather conditions. Especially when weather moves from low pressure to high or vice versa. According to my research, it is caused by the disturbance of the CSF flow. Due to Arachnoiditis our nerve root sleeves are clogged with fibrotic tissue and there are adhesions between nerve roots and the wall of the dura. Therefore CSF can't flow properly and causes pressure in several places. For example, although my injury is at L5/S1 level, i have pressure kind a feeling in my left shoulder which indicates a pressure issue as Arachnoiditis can't be related directly. Other symptom which we share is this pulling feeling in the spine. For me, it was much more severe in the acute phase of the Arachnoiditis. I feel like there's a tight rope at the base of my spine and whenever i bend forward or backwards, it pulls. It's not painful but very very weird feeling. And i guess this is due to fibrotic tissue as well. My biggest problem is sitting. If i sit more than 20-30 minutes, my body develops a delayed mini-flares such as urinary hesitancy, losing the feeling of going to wee and sometimes frequency. I feel good when i rest my upper body on my elbows, leaning forward to the desk or i rest my back in an inclined position. Sitting straight up, 90 degrees is not possible for me. Additionally my eye sight got worse since my injury. My nose is runnier than ever : ) Yes, it's very weird but thanks to Arachnoiditis, it's my reality now. Thank God, i don't have regular headaches but time to time i get ice-pick headaches. Btw, i live in Germany and there's a neurosurgeon who is specialized in Arachnoiditis and Tarlov Cysts in here called Dr. Warnke. You have probably heard of him. He's the only doctor that has diagnosed me in Germany, others were too ignorant or careless. And i'll see him this summer to talk about surgery. Just to keep in mind if you need a second opinion. Wish you a nice and pain-free weekend!

Listening to you sounds like you're talking about me. I'm amazed that we share these symptoms. I'm 59 and have been suffering for 42 years. Can I ask, did they discover the csf leak through an mri of the head or spine?, as I feel I need to get this checked out. Thank you, Jill

I really appreciate you , thank you .did you have he cysts removed , is it something that can be removed ?

Hi, thank you so much for sharing your story and the pain you experiencing. I am a 30 years old. unfortunately, I suffer from herniated disc and in 2016 I received spinal steroid shot and later 2017 I had a microdisdisectomey ...2 years later in 2019 right after giving birth to my daughter my back pain and sciatica came back and I found out about clumping nerve roots in my lower back and arachnoiditis 😢 after painful times mostly in my right leg and lower back in 2020 I received some oral steroids and my pain would go away for 3 to 4 months and I will be pain free but recently...lower back pain and sciatica like pain is back and I am miserable...most of the time doctors blaming arachnoiditis and too scared for treatment but I blame my condition to bad disc's I can not walk lately longer then 2 minutes can sit either and pain in in my right leg only sometimes I have headaches or that drunk head but I don't experience what you went through ! what do you think do you think my symptoms are from arachnoiditis? how long did it took you to feel really sick I traced back my arachnoiditis to the 2nd spinal injection in 2016 which gave me arachnoiditis initially....a doctor told me I have a severe arachnoiditis which is 9 out of 10 and he didn't expect it to go worse then this...I have not had any treatment for my arachnoiditis and now I am suffering from extreme back and sciatica pain enabled to move now for a month...

Hey becky can this cause your muscles in the legs being constantly tense ? I have a couple of herniated discs with trapped nerves but they told me the pain would be gone after 4 to 6 weeks it's now been a year and wondering whether it is aa as I have the same symptoms as you and I'm really struggling walking sitting for to long or standing for long I have had 16 episodes where I have passed out the only place I have a little bit of relief from the pain is laying down on my right side.

Hallo Becky, es ist bei mir auch nach der Operation nicht besser geworden. Mein Spinalkanal ist immer noch erweitert, die Zysten sind raus. Jetzt überlege ich die Shunt OP. Es tut mir so leid für Dich. Arachnoiditis ist schrecklich. Ich kann nicht mehr sitzen, und der Kopf platzt an manchen Tagen fast. Der Rücken ist steif.

Hi Becky. Does sitting hurt for you? It hurts me so badly. After sitting for > 20 seconds I feel occipital pressure headaches, then pain spreading to my arms, legs, lower back, then the pain just gets worse from there. Does this happen to you

how was your flight, how did you feel on the plane( did you feen spine pressure or pain) how do you feel during the flight and after?

Does your spine ever burn/ache? Do you ever get pain in your arms too?