April 30, 2013 at 12:25 am #3655jill22Participant
Hi! I’m new to the forum but not to Dr. Dianna’s page & interesting work. I totally understand the people who are saying that they don’t know how much more they can take. I’m in the same boat. If it wasn’t for me giving these horrible diseases to my children & a husband that’s doing his best to do everything I would have killed myself a long time ago. People wonder why we have crazy people doing such crazy things. I’d never harm anyone else but it’s impossible to get mental help unless u r rich or on Medicaid. But I’ve got to stay here & fight this pain, this hell everyday so I can be an advocate for my 3 boys. In the mean time I’ve got to figure out how to get off some of this pain medicine I’m on. I’m on the pain regimine of a stage 4 cancer pt & still stay n the bed most days. But the meds & ins r costing us to much $. I just had my 2nd tethered cord surgery (my cord ended up being tethered in 2 places), had my pressure checked & it was 32 & I had been taking diamox up to 1wk b4 surgery. It totally knocks me out. I’m only taking regular 250mg & even if I 1/4 them if I was to get pulled over I look like I’m stoned or something. I won’t drive w/my children w/me b/c I’m afraid I’ll wreck. My Dr. Wants to put in a lumbar shunt but said it may only last 8-12mos & I’ve talked to other patients that it caused their cerebellum to hernitate again even though they’d been decompressed. I’m so confussed on what to do? Giving up just seems like it would be better for everyone!!
CM, EDS,POTS, Basiliar Invagination, Retroflexed Odontoid, Eagles Syndrome, Fibromyalgia, Chronic Fatigue, Scoliosis, Kyposis, Pseudotumor Cerebri, too many to name!April 30, 2013 at 6:30 pm #3656Dr. DianaKeymaster
Hi! I’m new to the forum but not to Dr. Dianna’s page & interesting work. I totally understand the people who are saying that they don’t know how much more they can take. I’m in the same boat. If it wasn’t for me giving these horrible diseases to my children & a husband that’s doing his best to do everything I would have killed myself a long time ago.
CM, EDS,POTS, Basiliar Invagination, Retroflexed Odontoid, Eagles Syndrome, Fibromyalgia, Chronic Fatigue, Scoliosis, Kyposis, Pseudotumor Cerebri, too many to name!
Hi Jill22, I’m so glad that we all have a safe place to go to share this! I, too, Jill22, have kids with this condition, and a husband (Heaven knows why he is still with me!) who have kept me on this planet. At my worst, I didn’t doubt that I would end my life — all that mattered was when and how. (yikes) BUT, I knew I couldn’t leave my kids with few answers, and I am so glad that I am still here! Just figuring out that antihistamines helped us, and that we had low-level hydrocephalus was so helpful and encouraging, that I wanted to continue to fight this beast. I strongly believed that the majority of doctors treating us are way off the mark. But they were not patients, and we all know how almost impossible this condition is to explain to the doctors! I felt I was in the ideal place to use my body to figure it out. Answers have come, and as I pull the rest of this together, I wanted to leave you with hope. When I used to jog, but got tired and wanted to stop, I had my own little rule. I decided never to stop while running up hill. If I was running down hill and felt like I needed to stop, then I would stop. In other words, because our condition can flare and then ease off, I never make ANY decisions when I’m at my worst (when I’m “running up hill”). We know that we have times when the symptoms ease, and THAT is the time to decide how we are feeling about it all. (Please try to remember that “this too shall pass” when we are in the middle of a flare. Jill22, your kids need you, as does your husband. Answers are coming, I promise. Take as good care of yourself as you can, laugh at ANY opportunity to do so, and know that your kids won’t need to deal with the same issues we have had to deal with. They will have much more help than we have had! Meanwhile, they are looking to you to see how you react to this dreadful condition. They are looking to you for courage. Let’s all try to dig deep and find that courage which is often hiding in the dark corners. And you can always lean on us here. We understand. Big hug, my friend…May 21, 2013 at 10:10 am #3668BarbaraParticipant
Here’s a VERY interesting video which talks about many familiar symptoms and areas where many of us have difficulties. He’s observed that many conditions and syndromes overlap, they have similarities, particularly (Benign?!) Hypermobility Syndrome, Fibromyalgia, Restless legs, Autonomic Dysregulation, Cervical Instability, some mention of Chiari, etc. This video makes great sense to me. He talks about how symptoms could be triggered by subtle ‘cervical cord abutment’, not easy to spot on basic MRI’s. I could go on and on about it, you need to watch it:
What do you think ?
(UK)June 8, 2013 at 11:35 pm #3727Dr. DianaKeymaster
HI Barb, Did I answer this via email? BRAIN FOG! It is interesting, but I would really like to see the “normals” and don’t understand why he hasn’t already looked at normals. I think you can even google some good images, actually! I agree with much of what he said, but don’t think it is quite that simple, unfortunately. So many other points to consider: our propensity to have histamine/mast cell issues, hydrocephalus, viral triggers, organ failure, thromboses, etc. I’m glad he’s thinking somewhat outside of “tradition”, however. Thanks for sharing! 😉June 10, 2013 at 7:10 pm #3743BarbaraParticipant
That video was 2007. He said there was some research taking place in London to include normals. There is no doubt that there are the other things you mention involved but here Dr Holman explains the constant triggering (that many hypermobiles or those who’ve had neck injury) will be suffering, which causes the brain fog and puts us into the ‘hypervigilant’ state our bodies seem to be constantly in.
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