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MJParticipant
Hi Barbara.
That’s interesting that you mention sleeping sitting up. I can’t keep my eyes open about mid-day and have to nap and I started to nap sitting up on the couch with the collar on. I noticed if I wasn’t horizontal, the tachycardia, burning up, SOB (shortness of breath), red & hot swollen toes, weakness and all the other crazy symptoms weren’t quite so bad after the nap.
Thanks again – this will be of great help until I can find a doctor that will read TDT Part 2. You mentioned you had a head and neck injury that made things worse for you. Can I ask what happened? I had a severe neck injury 24 years ago. I was skiing and wiped out on ice and my head whipped back so hard and hit the ice. I tore everything from my ear to my collar bone. I believe this ‘set everything in motion’ for me. I have POTS, EDS, Raynaud’s, opposite of Raynaud’s, PTSD, to name a few.
MJ
MJParticipant9/10 Philadelphia Collar – Excellent support for head and natural curve of the neck. It
maintains the head and neck in good relation to each other, aiding CSF passage
through the cranio-cervical junction (between head and neck). I had a gross
reduction of my symptoms from the first day I wore mine, some immediate, some
eventual. Point of note: You do need to wear collar linings with this one!!Hope this helps, as it might not be the right type of collar that you are using, that’s all,
Regards
Barbara (UK)Hi Barbara.
Thanks for the info. Very helpful. I will look up the Pheladelphia Collar on line and give it a try. I have really been struggling for the last few weeks and I have to do something. The pressure and symptoms are so severe that I am experiencing A LOT of irritability, anger and even rage (which is scary). I have some really sore spots on the back of my head on the right side that radiate pain down my neck and right shoulder if I push on them. Right now they are sore even if I don’t touch them – maybe this is related to the rage.
Take Care,
MJMJParticipantHi MJ,
I noticed after I reduced my intracranial pressure with Diamox, that after about 1-2 months, I just didn’t need the collar much any more. Are you on any medications yet? Diamox? Mast cell treatment? Can you get some help getting to the doctor?I don’t have anyone to help me get to the doc. No contact with my family, not married & lost my friends due to depression/not functioning and not calling people back. I had about 3 hours of no neck pain the other day and I managed to go out and fax a letter to my Rheumatologist requesting that he read The Driscoll Theory Part 2. I have made it this far by myself…I will just have to suffer through it until my symptoms subside enough that I am able to get help. Once that happens, I can follow up with that doctor to see if he will read it or prescribe Diamox, H1 & H2. Dr. D, I am 100% convinced that the EDS is causing my PTSD, as per your theory. I know you did not specifically mention PTSD, but I believe it would fall within Mental Illnesses under Conditions Resulting from Poor Vagus Nerve Function (and CCSVI)in your Theory. I have gone through periods (even if only for a few hours) where I have no neck pain and thus no symptoms. When my neck is not sore and there is no pressure in my head, I do NOT have PTSD (and I do not have all the other symptoms like POTS, depression, etc) and I can function. Perhaps people’s personal life experiences contribute to how symptoms manifest. For instance, traumatic childhood=PTSD, positive up-bringing=high achiever, etc.? Thanks for your help. MJ
April 4, 2012 at 7:31 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1942MJParticipantA few times while wearing the cervical neck collar, something strange happened with my neck muscle on the left side. I could feel the muscle moving/jumping and the collar got very tight. It really scared me the first time, but it passed very quickly. Dr. D do you know what this is? I’m not worried about it, I’m just curious how it relates to everything.
MJParticipantI have those tiny red dots, and they too are more numerous lately. I recall researching them years ago. I believe (but I am not sure, so don’t quote me lol!) they are called petechia (or something like that) and may be caused by oxygen deprevation.
MJParticipantI do weight lifting. I have a lot of videos of it on YouTube. I can’t do it every day but on good days I love it!
That’s great! Lifting weights relieves a lot of stress. I had to stop about 7 years ago because my neck pain was just too severe. I even altered my entire routine, trying not to use my neck muscles, but you use them for almost everything you do.
MJParticipantOh, MJ, that is so great to hear! Even I fell asleep a few times trying to read it, so that is a huge compliment. I’m kind of a pictur-book sort of person (ha), so I knew I needed to include some diagrams and very clear pictures, MRI’s, etc. of what I was trying to describe. I hope those helped, too. Thank you again for your kind words. Big hug, 🙂 Diana
Yes, the pictures are a HUGE help! You don’t have to stop reading and do a search on line. Everything is right there in front of you – how convenient! It is one thing to read about something being described, but to actually see it makes a big difference. For instance, I described my SEVERELY distended veins and accompanying SEVERE symptoms to an internist, and she wasn’t taking me very seriously, however, on my next visit, I played a video clip (of the veins/symptoms) on my phone for her, and she was EXTREMELY concerned and made an immediate referral. Pics make a difference!
MJParticipantMeanwhile, have FUN and Heavens, please watch for speeding vehicles! 🙂
I only got out once last year and only a couple of times the year before. And up to 2008, I was able to snowboard once a year. Currently, I am unable to ride, but my goal is to get out there on this trike once I have done all of the things you mentioned – regain vagus nerve function, reduce hydrocephalus and regain control of those mast cells! And yes, a recumbent can be difficult for cars to spot, so if anyone gives it a whirl, make sure you have a flag. I also make sure I am “positioned” so I can be seen (e.g. leaving LOTS of space if a car is in front of you, so they can see you in their side view mirrors, etc.).
MJParticipantThank 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
MJParticipantHi 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!
MJParticipantHi 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.
MJParticipantThank 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.
MJParticipantI watched the ISNVD interview and I thought it was very informative. You seemed very calm and focussed (I would have been nervous!). You answered her questions very well. However, it was hard to hear some of the questions she was asking. The last few minutes were the most exciting for me, because I was waiting to hear about the Vagus Nerve. It was also nice to hear more of your own personal history/experiences. I just want to say Dr. Diana, that you have given a lot of people hope. You are so brave and so strong to have accomplished all that you have (research, discoveries, etc.) ESPECIALLY since you are a patient. I personally know how debilitating the symptoms are. You are very driven – you have the drive to succeed, and I thank you for all of your hard work. You have given me hope, improved the quality of my life (just from a neck collar!) and I know I will improve even more once I receive evaluation and treatment based on your work.
Gratefully,
MJMarch 9, 2012 at 6:01 pm in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #1809MJParticipantI didn’t think I had ever experienced anything like that, but I forgot about an episode that happened about 3 years ago. I was laying down on my ND’s (Naturopathic Doctor) table, and she was asking me some questions. Suddenly I couldn’t speak and I couldn’t move. I didn’t blink my eyes for at least 5 minutes, and they didn’t even tear up. I remember she just kept calling my name trying to get me to respond. But that was my only experience in that regard.
March 9, 2012 at 5:49 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1808MJParticipantLast week my massage therapist said my entire neck felt like steel. I could barely move. When she pressed on certain areas my arms would go numb for example. AFTER WEARING A SOFT CERVICAL COLLAR for just one week, I was in a lot less pain and my massage therapist said my neck felt better than the week before, but I had what felt like a marble on one side, and severe tightness (like steel) in an area on the other side (that gave me a headache and made me feel nauseous when she pressed on them). The pain also travelled when she pressed on them. This “marble” must be one of those knots Dr. Diana is speaking of! I will be seeing my Rheumatologist next week, and I will be bringing The Driscoll Theory and I will be requesting to be evaluated for CCSVI, External Communicating Hydrocephalus (trial of Diamox) and CCI (Cranial Cervical Instability). I will post something after the visit. Thanks Dr. Diana and everyone for all of your help!
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