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Every time I bend over (to put on shoes for example), my face turns red and I feel SO much pressure in my head. Does anyone else have this? You know how with the POTS blood pools in your arms and legs? It feels like blood is pooling in my head. It is much more severe in the evenings, and in the evenings I usually become SOB (short of breath) when I bend over and my head fills. Any thoughts?
Yup. It could be blood or it could be CSF fluid. I can no longer bend over for this reason. Forgetting and doing something wrong is at least 72 hours for it to go away. Drugs and pain meds don’t help. Please read Dr. Diana’s Part 1 and Part 2 when it is available. It will explain SO MUCH, especially this pressure you feel.
Thank you SO much for your input. I have read part 1, and I tried to get Part 2, but I don’t have a Kindle.
Every time I bend over (to put on shoes for example), my face turns red and I feel SO much pressure in my head. Does anyone else have this? You know how with the POTS blood pools in your arms and legs? It feels like blood is pooling in my head. It is much more severe in the evenings, and in the evenings I usually become SOB (short of breath) when I bend over and my head fills. Any thoughts?
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Hello everyone…I’m Kate/kkkkkatherine 1st timer here…just ‘discovered’ Dr. Diana Driscoll recently on YT…
Thank you Dr Diana, for sharing your knowledge, wit, warmth and kindness to all!!
[ all disclaimers duly noted! 🙂 ]Re: ‘HEAD FILLS WITH BLOOD WHEN BEND OVER’
I’ve had this all my life and just thought ‘everyone has this’…Not So…
I have been diagnosed / dx’d with ‘Multiple Sclerosis’ and CCSVI…
this was greatly relieved after my ‘liberation’ angioplasty Dec.2010…(seems
to be recurring, but I digress )Q : I no longer have the ability to ‘perspire’ facially…just seem to
be intolerant of HEAT, feel increasingly warm – in ‘olde days’ I WOULD be
‘sweating buckets’…any one else have this? thanks! kHi Kate. Thanks for your input. I REALLY appreciate it. I have been wondering lately if I have progressed to MS. Something to think about. Not sure if this is any help, but I cannot tolerate the heat at all. It brings on all my symptoms such as super dilated veins, SOB, tachycardia, weakness, etc. When I “burn up”, I do not sweat at all, and the only relief is to whip off all my clothes. However, I do have the ability to sweat (like in a really hot tub for example). I am wondering what all of your symptoms are? Maybe I have some of them too.
Hi Kate. Thanks for your input. I REALLY appreciate it. I have been wondering lately if I have progressed to MS. Something to think about. Not sure if this is any help, but I cannot tolerate the heat at all. It brings on all my symptoms such as super dilated veins, SOB, tachycardia, weakness, etc. When I “burn up”, I do not sweat at all, and the only relief is to whip off all my clothes. However, I do have the ability to sweat (like in a really hot tub for example). I am wondering what all of your symptoms are? Maybe I have some of them too.
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Hi MJ…
Boy, can I relate…’whipping off clothes’ to get cooler…LOL!! hold Ice Bag to wrists,etc.
I kept a Journal-type account of SOME my symptoms of ‘MS’ Just few days before my Angioplasty
LIST of my Improvements / Symptoms (Sx) lie within …
–cog fog diminished: feel more awake, more lucid dreams, better quality of sleep
— improved bladder: only need to void twice at night…go straight to sleep , voiding seems ‘more efficient’-streams, not ‘squirts’
–minimal Left ankle swelling, better color too.
— voice is stronger- my ‘Old Laugh’ has returned:stronger,heartier
–Balance is better- not dizzy in shower, can tolerate better…standing for 15 minutes
—get up out of desk chair more easily.
–no foot drag noted on tread mill, uneven pavement, flag stone walks ,etc.— I have more Sx but don’t want to ‘wear out my welcome’ here…lol!!
–my first visual Symptom ever…when overheated: vision looks like viewing through a FOG / Steam Room
Because as far as I knew, I went from ‘normal’ to MS-labeled…not sure about progression.
Hope this helps! k.
Dr D: please feel free to ‘curb’ my Verbosity …no offense intended 🙂 !Hi MJ…
Boy, can I relate…’whipping off clothes’ to get cooler…LOL!! hold Ice Bag to wrists,etc.
I kept a Journal-type account of SOME my symptoms of ‘MS’ Just few days before my Angioplasty
LIST of my Improvements / Symptoms (Sx) lie within …
Yes, this helps. Thanks Kate. And you could never wear out your welcome!
Thank you SO much for your input. I have read part 1, and I tried to get Part 2, but I don’t have a Kindle.
Hi MJ, You can download this to your computer! Instructions are on the video, and I made a special video about how to do this (I’m technically challenged, so I want to make it VERY easy for everyone). Give it a whirl? 🙂
Thank you so much. I’m REALLY technically challenged and I had to go to Staples to get help, but I got it downloaded. I did everything right, I just couldn’t get registered properly! lol
All this talk of CCSVI makes me think I really need to be evaluated before having tethered cord surgery. *sigh* my attempt to this at an “EDS knowledgable” doctor didn’t go well though because the guy was a self-righteous ass.
I can’t lean over either! I get nauseous like mad, pressure, sweaty and sick as heck – puts me out of commission and I have to immediately sit! I’m talking lean over to pick up a dropped tissue, barrette, or anything of virtual weightlessness. NOW, I can’t bend either because my joints hurt like heck. If I can’t lean or bend, how the heck am I supposed to clean my house??? Anyway, I’ve been incredibly upset about this and it was suggested (by someone knowledgeable) that it might be POTS – also might be tethered cord (by the same knowledgeable person).
I haven’t been diagnosed with POTS by a doctor but can’t stand much and am forever having to sit – that hurts too and my legs are a disaster area – so I have to stand briefly to unkink my tweaking legs – repeat – repeat – repeat.
Freezing limbs that have always freaked people out with major concern have now been met with burning heat and sweating through my clothing (ammonia like sweat). I think I fall into the range of being emaciated (and YES I do eat) so how on earth am I burning with sweat, randomly and for zero reason. I cannot tolerate heat anymore yet used to bask in it like a lizard or something. Used to LOVE heat as long as no humidity.
My heart races high and dives low for zero reason!!! Random!! My body ‘shuts down’ on me, AGAIN, randomly and for no reason at all. Stressful, for the first couple of years I would go around in circles as though madly chasing my tail in a confused and panicked effort to keep from hitting the floor. I feel as though someone or something is yanking the hair at the back of my neck backward and downward and my balance fails me. And, no, I don’t get the sensation in my hair – just my neck or head fails me and won’t stay upright properly.
I don’t know about POTS but DYSAUTONOMIA sure ‘hits the spot’ with what I’ve been experiencing for these last years. I haven’t been diagnosed with either. – Probably because I am deemed a liar or an exaggerator or annoying in some other way because I have too many problems or because one of the many doctors who keep replacing each other don’t believe in fibromyalgia. Or I am overdiagnosed and a hypochondriac (if I bring my notebook to prove that I’m not lying about the outlandish health things that I’ve endured). Basically, when the doctors leave and are replaced (high turnover), it’s a nightmare of losing the pittance of understanding that I had formerly broken my tail to acquire.
Just can’t win in efforts to secure a doctor. So much for 1st do no harm, huh. I sorta wish there was something that could legally be done to make the doctors be accountable to at least behave properly. It’s not a crime if they don’t understand but I think it is a crime if they abuse the patient by treating them like they are a ‘crazy’. That’s just not right!
Anyway, I don’t know if my head fills with blood when I bend over but I do know that it causes significant health problems for me to do so.
Hi,
It certainly sounds like POTS to me, I HAVE been diagnosed and I know the freezing limbs all too well, as it brings increased pain. Indeed I am sitting here in the midst of summer, with thick support stockings, legwarmers and long trousers, typing in fingerless gloves!As for your trouble bending down, my symptoms are very much ‘position’ related. I had a reason which brought on my Craniocervical Instability, in that I had an almighty whack to my head but, knowing what I do now, that the head ‘joint’ is totally reliant on ligament integrity, if you have the ‘stretchy’ type of EDS with weak ligaments, there’s every possibility that you too have CranioCervical Instability (CCI). This is what could be causing your symptoms of POTS, especially if you have a ‘low-lying hind brain’ (sometimes referred to as low-lying cerebellar tonsils, or cerebellar ectopia) that’s crowding the brainstem.
Just leaning slightly forwards can affect your Autonomic Nervous System if this is the case. I use a Philadelphia collar 24/7 to help ‘keep my head in a good position with my neck’, it helps although it doesn’t solve the problem totally, I have to be very careful too.
My advice, do as much as you can in a seated position, so that your head is straight forwards; avoid holding your head in ‘flexion’ if at all possible, as this will probably aggravate it; delegate – only do the tasks you can do without becoming symptomatic, get others to carry out the ‘triggering’ tasks – i.e. get people to pick their own things up, or use a ‘grabber’ to avoid bending.
You look after yourself – even when no-one else is!!!
Regards
Barbara
(UK)
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!I sorta wish there was something that could legally be done to make the doctors be accountable to at least behave properly. It’s not a crime if they don’t understand but I think it is a crime if they abuse the patient by treating them like they are a ‘crazy’. That’s just not right!
About 5 years ago, I saw an Internist. I was so excited because I actually had proof that my glucose levels were dropping into the 1’s and the 2’s on my glucometer (yes, it is possible to still be conscious). HE ACCUSED ME OF TAKING INSULIN AND ASKED IF HE COULD SEARCH MY BAG! I actually said yes, b/c I didn’t want it to look like I had insulin in there! He declined to search my bag and wouldn’t even look at my glucometer readings. He also did not read my list of symptoms that I brought in.
I also told him how when I go for a walk when it is cold outside, the temp. in my head (not my body) drops to the hypothermic levels (90, 91, 92, etc.) and this is when I get my symptoms. I offered to go for a walk to prove it to him and have him take my temperature when I got back. He declined and said that I was reading the thermometer incorrectly. Not that you need a BA in Mathematics for Commerce to read a thermometer…but I do have the degree and I AM NOT dyslexic!
He also had his secretary follow me downstairs and watch me get the blood work!!!
ANyway, I could go on forever about how I have not been believed or taken seriously about my symptoms; those examples were just from one doctor. In a lot of cases, they should be accountable for their actions/inactions.
MJ
. . . but I thought they were accountable – isn’t that what ‘Medical Negligence’ is ?
Regards
Barbara
(UK)I’ve often wondered if I have a law suit with my “ex-doctor” that treated me like a hypochondriac for nearly 20 years. In that situation, that I described above – with the internist – I requested a copy of the letter he sent to my doctor. He said to get it from my doctor and my doctor said to get it from him. Neither one of them would give me a copy. Isn’t that illegal?
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