July 4, 2012 at 7:27 am #248DizzyMeParticipant
Who else has trouble bending forward (as to pick something up from the floor, put shoes on etc)??
If I am very symptomatic any bending totally knocks the wind out of me and I feel awful for a few seconds. On a good day I can get away with a short bend but again if I do more I feel bad. It’s a feeling of breathlessness and head sensations like the blood supply has been cut off, it can also lead to transient nausea and “doom” sensations. Can you relate???
Any ideas why this happens? I was told my heart had to work harder against gravity when bending but I am wondering if it’s actually more to do with head position as we tend to “kink” the back of our necks when we bend. Maybe we compress something? All I know is it’s very limiting especially with 3 kids.July 5, 2012 at 11:25 am #2537wellwonParticipant
I too have issue with bending. Any time my head dips down. To me it is like suffocating? There can be an explosion of pressure around the top of my head. If I hurt my neck…which can happen just from one bending down, I may also be in pain (more pain) the rest of the day. I wish I knew what is was, but I am new here too and just learning.
I wish you the best in finding an answer.July 5, 2012 at 1:44 pm #2539Give My Daughter the Shot!Participant
I can’t bend properly due to joint problems and when I lean (began trying that as an alternative) it sends me into a wicked frenzy of debilitating symptoms. Awhile ago, I finally became so frustrated/devastated by that that I hysterically inquired of a reliable source (not Dr. Diana) why on earth my arms and wrists wouldn’t hold a tissue and when I would drop my ‘snot rag’, I couldn’t even pick it up. Oh my gosh, can’t even pick up own ‘snot rag’. Far cry from my identity -that one. POTS was mentioned to me again which returned me to Diana. She’d mentioned it to me awhile ago and I was too overwhelmed to accept an additional ‘issue’ at the time. I sorta ended up telling myself, “Yep, I spend my days on the pot and that is enough for me”. I withdrew myself from the idea of POTS. Well, after this alternate source AGAIN mentioned POTS, I had the umph and/or courage to come back to Dr. Diana and search for answers so that I can advocate for myself and my children. On a better day, I try to learn -try to make some sense of my body’s horrible and illogical betrayal of the very strong mental willpower that I’ve always enjoyed. My ‘will’ had always given me security, a sense of safety, independence, and a ‘can do’ identity! I’d always thought of myself as the ant that CAN move the rubber tree plant and my waif-like frame would always push forward. I would, sometimes, even sing the song, “Anyone knows an ant can’t move a rubber tree plant” but I would – I’d move it! Sheer willpower! Mind over matter! That began deteriorating about 10 years ago, in hindsight. I never let it bother me, mind you, because, after all, I’m a chick and a waif-like one at that, and it’s fine if God didn’t make me ‘sporty’.
Tethered cord was mentioned to me as well but I don’t remember if it was told to me as something to look into with regards to the nightmares that leaning causes me. I know that I feel as though there is a ‘too short’ rope in my spine. When I lean my head or move it (not every time so severe that it ‘breaks through’ as a layer above all of my other nightmare symptoms) it has a dreadful tugging on my lower spine/knot of bones/’my tail’. And visa versa.
I am, personally, positive that I am contending with dysautonomia. I am, however, not positive that I meet the text book definition of POTS – not saying that there’s not a great chance that I do but I wouldn’t swear to being exact same precision reaction each and every time I stand up. So crazy and all over the board.
Tethered cord, I haven’t really looked at as of now. It usually takes me awhile to even consider attempts at mentally ‘digesting’ possibilities. PLUS, I feel horrid every day (which doesn’t help either).
I will say that when I first started examining Dr. Diana’s site (when I returned to her after a several month sabatical of denial), I was only accepting of EDS, fibromyalgia and the chronic fatigue. I only had interest in figuring those out. I also was desperate for a place to ‘vent’ my questions about my terrible health after the doctors has been so abusive. Plus, my genetic doctor recommended support group (which I was involved in a diff one). Anyway, I am learning (at least for myself) that the reason Dr. Diana mentions all of the health topics is because they are COMORBID! I hadn’t considered that – hadn’t wanted to or been willing to. I’m sure I’m correct about this. She is the one studying and she’s the one working with the cutting edge specialists. I’m sure there is a reason she listed the conditions that she did. I will have to check into them bit by bit (as I am mentally and/or physically able).
I’m currently wondering about Chiari. Really not educated but think I should begin to look at it. Does it have any connection to tethered cord? I’m literally completely ignorant and just trying to psyche myself up enough to have the courage to take a peek. My legs have been a nightmare and without circulation (or so I think) – freezing and painful – for days now. My lower back is an absolute nightmare in ‘my tail’ region. Two days fighting a migraine – yeah, was successful at keeping it to only a 2 day headache. My stomach is a disaster too!
I hope and pray that all of Dr. Diana’s research ties this together and makes sense of it so that I can present to my doctors for proper treatment. God willing, at least they will stop MIStreating me!
I recommend checking into all of Dr. Diana’s research. I think CCSVI has to do with bending. I sorta get it but it is psychologically painful to have to learn about having something so ‘rough’. When I asked a non-PCP doctor she said that it was very technical. I’ve taken a break from learning about this but think it may be applicable regarding bending. You may be able to absorb more than I and might check this out. Also, there has been tons of posting with regards to this and you may wish to read the other posts. It seems that nobody can bend.
Bottom line, check into what Dr. Diana says and answers may be ‘right under your nose’. I plan to continue my understanding as I am able. Then I have to figure out how to present to doctor.
🙂July 5, 2012 at 7:49 pm #2543BarbaraParticipant
The fact that the head, is only held onto the neck with ligaments, proved to be quite an important player in the failure of my recovery, following my head and neck injury in 2002. Bending forwards caused me no end of problems, non the least of which was that it caused my heartbeat to instantly change – weird! I didn’t have to bend right forwards, just leaning forwards could trigger it. From immediately after my accident I couldn’t work bending forwards at all, it made me feel so ill.
By 2010 I had been diagnosed with the hereditary condition called Ehlers Danlos, wherein I have a problem in the production of collagen – Ahh, things started making sense now because ligaments are made of collagen!
Now then, I’ll try and explain why bending forwards can make you symptomatic. Dr Diana Driscoll says External Communicating Hydrocephalus plays a heavy role in our condition because an excess of cerebro spinal fluid (CSF – which is the fluid that normally gently bathes the brain) collects above the brain, in the subarachnoid space and bears down on the brain. This causes the brain to put subtle pressure on the cranial nerves, which lay at the base of the brain (ok so far?).
This pressure, on the cranial nerves causes a wide variety of symptoms that come and go (intermittent, therefore difficult to test for, sound familiar?). Anyway, these symptoms affect the rest of the body in detrimental ways, as the level of pressure inside the head intensifies.
Why does the pressure intensify ? well, the downward bearing weight, from the excess CSF in the subarachnoid spaces above the brain, also displaces the back lower part of the brain, the cerebellum (or more precisely, the cerebellar tonsils). It pushes this bit of cerebellum brain into the hole at the bottom of the skull where the brainstem/spinal cord passes through. This bit of cerebellum brain, being where it shouldn’t be, acts as a ‘bung’ between the head and spinal ‘CSF pathways’, blocking or partially blocking the flow. (Still with me ?)
Additionally, this bit of brain, once in this rogue position, puts subtle pressure onto the brainstem, which is now directly infront of it. The brainstem is responsible for regulating the Autonomic Nervous System, so this pressure interferes with the normal autonomic function (breathing, heartrate, blood pressure and temperature, etc.) and generates the symptoms of POTS (Postural Orthostatic Tachycardia Syndrome). (Still ok ?) This part, is all going on, in an area referred to as the craniocervical junction (or in layman’s terms the joining of the head and neck).
So, knowing all that, along with knowing that EDS weakens ligaments, imagine what the state of your ligaments are in, that are holding your head in place, hhmm. So, here we have a head that weighs similar to a small bowling ball, fastened to a neck by some substandard ligaments. Imagine what the influence gravity would have on it, when we go swinging it about.
Remember that rogue bit of brain ? well each time you bend forwards it is getting subtly compressed by the back edge of the opening of your skull – not good! In turn, that bit of brain will be compressing your brainstem which is in now in front of it remember – REALLY NOT GOOD !! At the least pressure, it will probably cause an autonomic reaction of sweating, any firmer might cause nausea, firmer still can cause what’s known as a ‘drop attack’ where your legs just give way, for seemingly no reason. Get the picture ?
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis! and oh, I forgot Arrhythmias – confirmed as runs of Bigeminy and Trigeminy.July 6, 2012 at 7:58 am #2545DizzyMeParticipant
Wellwon – Yes it’s a suffocating sensation and I get the pressure too.
GMDTS- Can relate to the snot rag! My husband comes home to a fairly decent house from the waist height up but all sorts of things on the floor that the kids have dropped and I know better than to start grabbing them all! Oh yes doctors, it’s a nightmare but I hope now we are all on a journey back to our old selves.
Barbara- Thank you so much for the fantastic summary. I will use it when I see my POTS consultant next and try to get some testing done.
XSeptember 24, 2012 at 10:56 pm #2961Dr. DianaKeymaster
Hi DizzyMe and friends, Oh, my, I couldn’t even LOOK down, much less bend down!! I was supposed to take an IQ test for insurance (to test for brain fog). The test was on the desk. I told her I couldn’t look down to take it. I could LIE DOWN on the floor and take it, but forget the desk. Then it got so bad that I couldn’t turn my head without feeling as though I was passing out. Not just feeling “like” I was going to pass out. I felt like I lost consciousness for a split second. That sense of doom you described? Boy, do I know that feeling! I had my husband pull the car over to the side of the road because I felt like my brain was suffocating. I told him it was something about the position of the seat. I couldn’t get oxygen to my brain… Then came cervical collars, recommendations for cranio-cervical stability surgery, neck fusions, talk of brain shunts for my son and I. But we were “triggered” by viruses. I felt like they were missing something. Somehow, I was able to refuse surgery for us. It is my fervent hope, that you will respond as we did to treatment (did you try Diamox, BTW? That was a GREAT start!). Now, while listening to music in the car, I find myself throwing my head around to the music –OMG. I used to be afraid to MOVE and now I’ve become super rock-star bobblehead? No symptoms? There is hope for all of us, my friends… 🙂 Diana
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