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

Подписаться 578

Просмотров 2,4 тыс.

50% 1

In this video I discuss twelve of my most prominent - but bizarre - daily symptoms. I have been diagnosed with arachnoiditis (probably mildly adhesive) and a spinal CSF leak. Although we are unsure if I am still leaking or whether I now suffer more with CSF pressure and flow issues related to the arachnoiditis/ tarlov cysts and/ or post-leak. I seem to suffer with high pressure issues these days more than low pressure but after 7 years of suffering since my accident (a ladder fall) my whole intracranial pressure system is completely dysfunctional and unbalanced in many ways.
I also update on my case including: Having Covid in March 2022 and flying to Mallorca (2 1/2 hr flight) for a family holiday in April 2022.
Video content Summary:
0:00 - Intro
1:40 - Having Covid March 2022
4:23 - Family holiday to Mallorca Spain including flight
7:50 - 1.I have felt drunk for seven years
9:19 - 2.I usually feel weird: pressure & pain
10:48 - 3.Stiffness, stuckness & pulling sensation in my spine (11:48 Tarlov Cysts)
12:09 - 4.Sitting down aggravates all my symptoms & legs go numb
14:17 - 5.When I sit I am better leaning forward on hard chairs or with a wedge cushion
16:50 - 6.Standing in one position too long makes me feel really ill
18:25 - 7.I constantly feel compelled to move around
20:35 - 8.I get headaches & feel groggy in the nights & in the morning
22:09 - 9.My skin often has crawling pins & needles sensation
24:00 - 10.Going for a wee makes my head worse
25:54 - 11.My head is very hypersensitive to any ICP (Intracranial Pressure) changes
27:52 -12.My eyes & brain are supersensitive to lights & moving images
For the full summary of my medical history and footage of my January 2021 arachnoiditis flare see this 5 min video: • MY SPINAL CSF LEAK & A...
To see more about how I manage my arachnoiditis symptoms please see: • MANAGING MY ARACHNOIDI...
To read more about my arachnoiditis diagnosis in July 2020 and journey since then see: beckyhillblog.com/category/ar...
To view my Jan/ Feb 2021 arachnoiditis flare playlist including symptoms see: • Arachnoiditis Flare Ja...
Twitter: Beckyhill3
#Arachnoiditis #Adhesivearachnoiditis #SpinalCsfLeak #CSFleak #TarlovCyst #SIH
UK CSF LEAK CHARITY: www.csfleak.info/
US CSF LEAK CHARITY: spinalcsfleak.org/
SPINAL CSF LEAKS: Clinical Presentation, Investigation Findings, and Treatment Outcomes of Spontaneous Intracranial Hypotension Syndrome (NHNN authors): jamanetwork.com/journals/jama...
ARACHNOIDITIS: ‘Arachnoiditis - Taming the Most Painful Pain’ Dr Forest Tennant video
• Arachnoiditis-Taming t...
ARACHNOIDITIS: Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) www.practicalpainmanagement.c...
IV STEROID TREATMENT: A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis - A case series and literature review www.sciencedirect.com/science... And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania www.karger.com/Article/FullTe...

Опубликовано:

27 июл 2024

Ссылка:

Скачать:

Готовим ссылку...

Добавить в:

Мой плейлист

Посмотреть позже

Комментарии : 82

@kayhayden8408 2 года назад

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 🙏

@beckyhillblog 2 года назад

Kay Hayden it always helps to know when others experience similar. With regards to positioning - it does seem very different for different people. It maybe depends on where leak/ AA is etc. I haven’t always felt better walking either - in worse seasons I couldn’t. But better seasons it helps! Thanks for your support Kay!

@lemoncuda 11 месяцев назад

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

@beckyhillblog 11 месяцев назад

Thank you for your encouragement- I think it takes years to begin to be able to verbalise all of the strangeness that occurs in our bodies from AA and all the subsequent nervous system and pressure dysregulation and pain. So much of it feels so ‘bizarre’!!

@scottbrown2295 2 года назад

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.

@beckyhillblog 2 года назад

Thank you for your comment & sharing some of your story. As horrible as it is having these symptoms - there is always something somewhat comforting when we know we are not alone and that others experience similar to what we do. So I appreciate your comment too! As I say in my video - it can help us feel ‘less weird’!!

@drogers 11 месяцев назад

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!

@beckyhillblog 11 месяцев назад

It can all get so confusing at times - especially what is high or low pressure or perhaps flow issues. I am glad my videos have helped like a conversation… it can help our own mental health and ability to communicate with others the more we can verbalise the issues and symptoms ourselves.

@susanmathews8927 2 года назад

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.

@beckyhillblog 2 года назад

I am sooo glad that you now feel less alone. I am thankful the internet allows us to connect with others like us. It helps me when others say they experience similar things too. I also appreciate you taking the time to tell me too!

@threadsintime6379 9 месяцев назад

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

@beckyhillblog 9 месяцев назад

Thank you. I am so sorry you are suffering so much - especially after getting AA from what should have been a wonderful experience (having a baby). You have endured for so very long - I pray you will find ways to help you manage into the future… it must be so very very hard/ especially when things get even worse. 😔

@kengilmore23 2 года назад

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!

@beckyhillblog 2 года назад

I am glad my videos help you not feel so alone. I am so grateful for the internet for that as we would probably not know others with these conditions otherwise. You are right that we all have to learn our own unique ways to navigate our illnesses. We can learn from each other but often have to discover our own paths. I am glad you have found some things to help.

@antrie1809 Год назад

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.

@beckyhillblog Год назад

I hope that you find more relief too! Yes there are so many many strange symptoms linked to arachnoiditis/ AA/ TC & spinal CSF leaks & pressure. I have at least another 10 notable ones I will make another video on at some point! Thank you for taking the time to comment!

@pennyhardy356 2 года назад

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.

@beckyhillblog 2 года назад

Thank you Penny for your messages & information - it’s always good to learn new things & discover more options!

@beckyhillblog 2 года назад

@Felipe M. C. Conrado sorry I don’t know what that is.

@jamesgreene1376 4 месяца назад

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.

@beckyhillblog 4 месяца назад

I am so sorry to hear of all your suffering Judith. Having so many strange symptoms really does make life so difficult - especially when doctors do not understand what they are. I hope that you find more answers and help soon.

@jamesgreene1376 4 месяца назад

thank you@@beckyhillblog

@Langolin1998 2 года назад

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.

@beckyhillblog 2 года назад

Thank you for taking the time to comment & share some of your story too. It does help when we discover more people who feel similar to us. I totally relate to you sharing that we are always having to analyse and adjust our positions accordingly. This is the story of my life - constant micro-managements to try and maintain better symptoms. It’s constant - and exhausting. I am very blessed I can walk more now that does help. So whilst I can do that I do it as much as I can. Sending empathy & love x

@Langolin1998 2 года назад

@@beckyhillblog Yes, you can’t “just be,” when you live with something like this. And like I mentioned, I’ve already been living with the brain cyst, among many other rare medical issues. There’s always a feeling of being on heightened alert with what’s going on with your body. People don’t understand how intune you become with yourself and can literally, self diagnose, things. Well thank you for your answer. I hopeful that some of Dr. Tennant’s protocols will help. He wants me to be part of his research efforts due to the type of case I have…how I got it etc. So we shall see. Sending hugs and love back. Keeping you in my prayers 🙏

@umitgunay7229 2 года назад

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!

@umitgunay7229 2 года назад

I forgot to mention that since my injury i have tinnitus on both ears, 7/24 : /

@beckyhillblog 2 года назад

Thank you for taking the time to reply to me Umit - it’s always interesting to hear others experiences when they are similar. I have to spend so much of my time trying to ‘manage’ the ‘CSF flow issues’ as much as we can. Once my CSF is flowing better my ‘drunk head’ is less acute and more manageable - although always there. Yes I have heard of Dr Warnke and listened to a couple of his lectures/ videos which were really helpful. I hope that he can help you further.

@NatesEscape 2 года назад

Do you also get popping ears? This sounds like me, I had an epidural steroid injection, arms and legs go dead/burn ringing ears and I had CSF leak symptoms for months before they started fluctuating

@NatesEscape 2 года назад

Also worse when lying down and sitting... Sitting is the worst and ears ring louder when lying down/sitting

@beckyhillblog 2 года назад

@@NatesEscape my ears regularly crackle or pop like they would do on a plane. It links to the sensation of fullness and pressure in my head. I have spoken about it in my videos before. I can also yawn a lot when it gets bad - like my body is trying to regulate itself & balance equilibrium.

@jillscott6270 Год назад

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

@beckyhillblog Год назад

My spinal CSF leak was seen on MRI in 2019 in my cervical (neck) ventral (behind spinal cord). Although I know many people with leaks seen there that stem from leaks in the upper thoracic spine. A thoracic CT in 2020 showed I have multiple micro bone spurs in my upper thoracic spinal canal that press into the dura so one of those could have pierced the dura originally like a needle & may well still be there preventing full healing, although surgeons state often membranes can form over the leak to slow it somewhat. But saying all that my scans were read as ‘clear’ for 4 years… it can take specialists with a lot of experience to see the leaks on some peoples scans. So it’s not a simple thing. But a MRI of the brain and spine with and without contrast (into veins) is normally what is used for diagnosis. The thing is with AA - it can also cause CSF seepage and flow issues. So sometimes I guess there may not be an actual separate leak. It may all be linked to the AA. So it can all be rather confusing!

@Christinesobsevations 5 месяцев назад

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

@beckyhillblog 5 месяцев назад

No I haven’t had anything removed. Procedures on my spine could risk further leaks/ flare the AA.

@paulgoodwin3496 2 года назад

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.

@beckyhillblog 2 года назад

I am so sorry to hear that you are in so much pain. My legs and whole spine do constantly feel stiff and tense - that’s why I have to walk and move around so much to try and stop that feeling of stiffness/ tension/ stuckness quickly happening if I stand still or sit for too long. I hope you get more answers soon.

@patrycjakotlarek3643 2 года назад

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?

@beckyhillblog 2 года назад

I speak about this in the video. Yes I felt a lot of pressure and pain especially during landing. Once landed and I could walk things improved to ‘my normal’

@corinabock Год назад

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.

@beckyhillblog Год назад

Yes it’s a really horrible illness. I hope you find something that helps you!

@corinabock Год назад

@@beckyhillblog oh thank you so mach.

@abdurrahimsevim2659 2 года назад

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...

@beckyhillblog 2 года назад

I am so sorry to hear of your suffering. It’s especially hard when you are younger and have younger children. It is truly heartbreaking when we cannot be the Mum’s we want to be and the pain and debilitation takes so much away from us. I guess it’s hard to know what is due to the disc problems and what is the arachnoiditis- they can be linked. I am glad they originally tried you with steroids. Methylprednisolone/ prednisolone or dexamethasone can really help for flares and symptom maintenance but doctors are often understandably reluctant to use them because of their risks and side effects like osteoporosis. However also getting worse with no help can bring many long term consequences so often it’s a risk needed to be taken. But it can be hard to find that help. It’s always difficult to say what symptoms are from what when the same area is effected by different things. I know people with herniated discs that can bring so much pain and effect their mobility and ability to sit etc. However their symptoms are usually not connected to the inner spinal canal so they don’t get the same head and CSF pressure/ flow issues etc. If you have both herniated discs and arachnoiditis then you very sadly have both things to contend with and want to avoid any epidural steroid injections etc or procedures that can make the arachnoiditis worse. I really do feel your pain and understand your confusion and need for more answers. I hope that you find the right doctors to help you on that journey and that you find more healing/ relief soon. Adhesive Arachnoiditis is sadly something we have to live with and manage but there are things that can improve symptoms in some. But it all depends how severe it is in how much it responds. Take care. Xx

@beckyhillblog 2 года назад

Your other question about how long before I felt really sick is complicated because I felt really ill from the start as I also had a spinal CSF leak - but it took time for the lumbar arachnoiditis symptoms to get worse. But for me it’s always come worse in flares. So it’s difficult for me to say. My story is complicated my a spinal CSF leak too. Hence so many CSF pressure issues on top of the normal arachnoiditis head issues. It sometimes makes it hard to tell what is what.

@abdurrahimsevim2659 2 года назад

@@beckyhillblog thank you so much for replying ...i will pray for your recovry

@JohnnyFive Год назад

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

@beckyhillblog Год назад

Yes very much so - but not quite so quickly. It also depends on seat and seating position like I share in the video. I can sit longer on hard chairs leaning forward esp if there is a table to lean my elbows onto. In the car I have a wedge cushion to make the seat more level and have the back very upright or slightly leaning forward. The worst seats for me are soft settees. I can only tolerate those maybe about 5-10mins. When in a flare/ relapse. I hardly sit at all as it all happens within seconds to minutes. I don’t get as much arm pain. Mainly head, neck, spine -esp lumbar and sacrum. Then legs go tingly and numb and I struggle to walk at first after sitting for a while.

@beckyhillblog Год назад

I also talk about sitting challenges and how I sit in this video ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-xpBjBG4vUlw.html

@rosetiger7268 10 месяцев назад

I think a lot of it (?) Is a spinal fluid flow problem. And sitting compresses the spine. Sitting causes me back spasms Oh as i go along in the video you say the same thing lol Im sorry :( that you have to go through this too :( but its comforting that im not alone in this....

@beckyhillblog 10 месяцев назад

Yes there are still so many questions and theories to understand all the bizarre but awful things that happen in our bodies on a daily basis.

@rosetiger7268 9 месяцев назад

@@beckyhillblog i was wondering, do external noises (slams, heavy motors) cause a flare? It does me. I had to walk by a construction vehicle now I'm in a flare for hours:/

@beckyhillblog 9 месяцев назад

@@rosetiger7268 Yes. But I would say a ‘short term exacerbation of symptoms’ or a ‘transient flare’ that makes me worse in that moment or for a little while afterwards. But only really my head/ brain symptoms. To counteract that I try and avoid such noises, use ear plugs or normally I have my headphones with me and listen to quiet music to try and block such noises. I also try and avoid sitting near music speakers as that can make me feel horrible.

@rosetiger7268 9 месяцев назад

@@beckyhillblog me too:/ and I used to love music

@rosetiger7268 9 месяцев назад

@@beckyhillblog im so glad I found your channel. I thought of telling my story in video but ... idk it's a lot for me (shy). The prednisone (by doctor prescription), the doctor overdid too much for me and I had to get my adrenal gland removed and also I have a lump in my pituitary gland. Its hard to have all these auto immune problems too. I wake up daily suffocating. I'm glad headphones work for you. Sometimes they can help me but I feel pain even when I don't hear the cause (noise). All of a sudden its a severe spasm and I take a headphones out and its bass or construction, or pounding.. I never knew how loud the world is before this condition. I got it from having a baby, epidural wrong 8x

@NatesEscape 2 года назад

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

@beckyhillblog 2 года назад

Yes often feel the burning in my spine esp if sitting, bending or crouching to pick something up. Pain in arms only occasionally- more in flare.

@NatesEscape 2 года назад

@@beckyhillblog my spines been burning anytime I put pressure on it, like sitting in a car or lying on my back

@beckyhillblog 2 года назад

@@NatesEscape yep that happens to me… or more constant later in day. Or in a flare.

@beckyhillblog 2 года назад

@@NatesEscape yep that happens to me… or more constant later in day. Or in a flare.

@NatesEscape 2 года назад

@@beckyhillblog I just want to say thank you, I still haven’t been diagnosed yet but I’m pretty certain I have arachnoiditis and watching your story has given me hope to hold on ❤️ Mine was caused by a cortisone epidural

@shanellecauchi6037 Год назад

Do u get the feeling like your head is to heavy for your neck

@beckyhillblog Год назад

Yes I can very much relate to that feeling/ sensation.

@nazirullahkhan8533 6 месяцев назад

A very long prelude

@klauswinzig4997 8 месяцев назад

Are you be able to work?

@beckyhillblog 8 месяцев назад

No not paid work only voluntary work that I can fit around my symptom management and housework etc. I think it would be extremely hard for me to work in paid work because even though these days I can be upright a lot of the day and walking a lot. I have to constantly keep moving to keep my pain and head/ spine pressure and other symptoms under control. This involves regular walks. I also cannot sit for long or concentrate on computer or written tasks for more than 20-30 mins at a time. I do actually find focusing on the housework / cooking etc etc I can do at home in my own pace enables enough movement and doesn’t require too much brain power and concentration so I tend to focus on that and thankfully my husband can support the family financially. I do do various things for our church including admin, web, social media and leading some meetings at home, some one to one pastoral meetings etc which enables me to have enough to do with purpose to keep me occupied - without overwhelming me. And I can step back from things of struggling or in a relapse. So I am very grateful to have that privilege. I think trying to maintain a paid job at any point over the past 9 years since my accident would have pushed me way too far over the edge and totally unbalanced our family life… but in reality I would have had to give up the vast majority of jobs/ careers anyway. It would just not have been sustainable in any way.

@klauswinzig4997 8 месяцев назад

@@beckyhillblogyes, sounds like a privilege in a bad situation. I can feel with you. Aktually I am be able to face 2 hours in the office. I sit 40 Min. stand 20 min. In between I have to get up. So it is just suffering, after 2 surgerys ( incl. Lp shunt). I wish you all the best.

@beckyhillblog 8 месяцев назад

@@klauswinzig4997 I am glad you can do something. But yes I imagine it to be very very difficult. If your symptoms are similar to mine. 😩