sue1234 Posted July 23, 2012 Report Share Posted July 23, 2012 I was reading something interesting regarding patients with spinal cord injury. According to the July study, the more severe the injury above the thoracic level, the less control over the cerebral autoregulation when upright.http://www.ncbi.nlm....pubmed/22720841I am just looking at various possibilities for POTS, as I don't feel the researchers are looking down all avenues. I found this old thread that talks about some of our neck issues, and after reading this study, makes me wonder if the physical brain and/or cervical issues some of us have could be more of a player than originally thought.Here is the old thread. As you will see, some of us have common neck issues and others have brain issues, such as possible Chiari. So, maybe our cerebral issues when standing are not directly from changes in peptides, etc., but only indirectly. Maybe the issue of the spinal cord or brain is what sets all that off.http://forums.dinet.org/index.php?/topic/19617-headneck-possible-contributor-to-pots/page__hl__mechanical__fromsearch__1 Quote Link to comment Share on other sites More sharing options...
bellgirl Posted July 23, 2012 Report Share Posted July 23, 2012 I have kyphosis, which is a curvature of the cervical spine outward at my neck, and have always thought this could be a contributing factor! I'm going to talk to my doctor's with my appointments in September. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 25, 2012 Report Share Posted July 25, 2012 Yeah they also tend to have postural hypotension but this is quite interesting. Why cerebral autoregulation is abnormal as a rule in POTS is poorly understood. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted July 26, 2012 Report Share Posted July 26, 2012 That reminds me of getting the adrenaline surges at night while your're asleep as part of POTS. Postural orthostatic tachycardia syndrome would indicate your standing up, yet these surges that are considered a symptom of POTS occur when you are lying down. Sometimes I think... Is POTS the disease or the symptom of the disease? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 26, 2012 Author Report Share Posted July 26, 2012 I personally feel POTS is a symptoms. I also look at MCAD as a symptom--just my personal opinion. I feel the doctors are only diagnosing us with "symptoms" and not making the effort to look for the core problem. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted July 26, 2012 Report Share Posted July 26, 2012 Sue, I agree.... at least in my case, Quote Link to comment Share on other sites More sharing options...
bellgirl Posted July 26, 2012 Report Share Posted July 26, 2012 The more I learn, the more I don't know, anymore . I still think there is so much to research, and I think just symptoms are being treated, not the disease. Now my teeth are shifting, which is indicative of bone loss. I need another bone scan. It's been about 5 years. More vitamin D, calcium, and magnesium please Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 26, 2012 Report Share Posted July 26, 2012 I agree with you Sue....I am tired of getting the band aid solution to treat this symptom or that symptom....I really wish these specialists would push harder for a etiology to this illness....I also have curvature of the spine....loose lumber joints..locked pelvis joints...and neck issues. I have always from day 1 said that my spine affects my symptoms somehow. Some of my worst bedridden flares came right after any type of stress to my spine....... Quote Link to comment Share on other sites More sharing options...
McBlonde Posted July 26, 2012 Report Share Posted July 26, 2012 This is off the topic of the thread, but if I don't type it now, I won't remember. Cerebral hypoperfusion ***** so bad!! I see many of y'all mentioning benadryl..... Why (or what is it) that benadryl helps? Thanks! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 26, 2012 Report Share Posted July 26, 2012 McBlonde a lot of us on here have been able to attribute some of our symptoms to Mast Cell involvement....(twitchy cells in your body that release certain receptors ie histamine, heparin, leukotrines plus like 200 others into your system causing various symptoms ie flushing, tachy, low BP, nausea, shortness of breath, GI issues, rashes, joint pain etc) the benadryl is used to calm the mast cells (for lack of a better word). I myself only use it when I am having a bad flare and I can tell its mast cell related. Some people may use it to help with sleep issues too. Sorry if that was way more info than you needed or if you already knew that Quote Link to comment Share on other sites More sharing options...
McBlonde Posted July 26, 2012 Report Share Posted July 26, 2012 No!! Thanks, lol! If I knew it, I don't have enough blood in my brain right now to retrieve it! Thank you for answering! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 26, 2012 Author Report Share Posted July 26, 2012 Speaking of neck issues, I brought my head and neck MRIs to the last two different neuro appts. Neither one would look at them. The second one even said, "oh, alot of people have some cervical stenosis". Maybe I should look for care in another country, somewhere where doctors think differently. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 26, 2012 Report Share Posted July 26, 2012 I hear france has a great health system not to mention daycare and everything else I am in Canada.....our health care system used to be really good but its leaving alot to be desired now that everyone wants to privatize everything.....and the wait times arrrgh!!! you can wait between 6-8 months to see a specialist Quote Link to comment Share on other sites More sharing options...
McBlonde Posted July 26, 2012 Report Share Posted July 26, 2012 and what is SO frustrating is waiting for months on end to see the best specialists and still not getting the answers! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 26, 2012 Report Share Posted July 26, 2012 so very true Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 27, 2012 Report Share Posted July 27, 2012 I've read about dysautonomia with spinal cord injury and I see more orthostatic hypotension, bradycardia and high BP mentioned. I think most of us don't have OH and most have tachycardia and low BP. I'm not finding in the literature the POTS like symptoms with neck or spinal injuries. Anyone come across anything (besides that Dr. in NC) in the research? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.