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September 1, 2012 at 8:09 pm in reply to: Did you see the video "Is it POTS or Dysautonomia"? Curious about your thoughts. #2836MJParticipant
Not “sick” at all! With AIDS, as frightening as it is, they have a fairly defined cocktail to take, and doctors have heard of AIDS! I remember wishing for a brain tumor or breast cancer! I think we’ve all been there. Questionnaire/ checklist of symptoms coming out soon! 🙂 Diana
OMG! I remember telling someone I wished I had cancer instead! Just to be diagnosed and treated would be so wonderful!
MJParticipantMj I dont now what it cost at Mayo as my insurance covered all but $5,000 over the 3 visits. They were very good about letting me set up a payment plan to pay that off. I will take some time to pull my records and give you an estimate of the test and charges. Brent
Thank you Brent. I would appreciate you looking up the costs. Hopefully though, I will get into Dr. Diana’s clinical trial and there will be no need for me to spend thousands at the Mayo Clinic.
I too have a crazy high heart rate on standing. It can go as high as the 150’s, but it only has to get to 120 for me to become SOB (short of breath). Funny, I have it all on video (wearing a heart rate monitor) but I can’t even get POTS testing. I was diagnosed by a ND (Naturopathic Doctor) using the poor man’s TTT (BP & HR laying down and then standing).
When I am depressed, coming to the Forum helps me feel better.
MJParticipantHi Brent.
Welcome to the Forum. I have many of the things you are describing. Have you been tested for EDS? Also, do you mind if I ask approximately what you had to pay at the Mayo Clinic? I would need similar tests to the ones you have had, and I have NO idea what the cost would be. For some reason I always thought it would cost about $25,000 just to go there, which would be well out of my reach.
MJ
August 30, 2012 at 3:25 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2824MJParticipantI’m so glad the deafness cleared up! I’m still suffering a bit from tilting my head like that, but it was worth it to get the picture. I have not been tested for mast cell activation. No one is taking me seriously or even trying to help me – I am not being tested for anything. I need to find a doctor, as mine just relocated. The only thing I have a confirmed diagnosis of is Classical EDS. And I have POTS ‘unofficially’ confirmed, with my Naturopathic Doctor doing a poor man’s tilt table test in her office. I’m pretty sure I have Mast Cell issues, Dysautonomia, CCI and CCSVI, just to name a few.
I looked up diagrams of neck veins, and I believe that vein is the external jugular, and I believe that the internal jugular is also over-sized. You can see the enlarged vein branching off a bit, but then it disappears. I think that is the internal jugular and the swelling stops when it goes behind the muscles and becomes ‘internal’.
Also, I believe I read that there is a valve about 4 cm above the clavicle, which is where the vein appears to stop. So, it could be that the part of the brainstem that controls valve function is being ‘pressed’ on by something with certain head movements. It could also be that the part of the valve that prevents the back-flow of blood is somehow becoming impaired. There are so many possibilities. It may even be related to the heart.
Thank you SO much for chatting with me about this Barb. I posted the pictures, and although 50 people viewed them, no one replied.
Take care,
MJAugust 29, 2012 at 5:23 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2819MJParticipantHi Barb,
Yeah, I almost passed out after taking those pics, and my neck still hurts from tilting my head back. So, I hope you aren’t still deaf in your left ear LOL! You may want to look in the mirror more often to look for veins while you are ‘in motion’ so to speak. I get that vein from brushing my teeth, rinsing with Listerine, washing my face, just walking, tilting head forward and backward just to name a few. Anything that ‘jiggles’ my head and neck around causes that SEVERE neck pain and symptoms, and I look in the mirror – and there’s that vein! I NEVER noticed the vein before, and I NEVER would have thought to look for it if it weren’t for Dr. Diana’s neck vein video (where she breathes in and out).
August 27, 2012 at 2:07 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2813MJParticipantHi,
I’m curious, of those who have found they have CCSVI, which side of their necks do they get this head, neck to shoulder pain in, is it the same side as the wide engorged jugular vein, or the other one ?Hi Barb, my son and I both have the BIG, oversized veins on our right side, but both of us have neck pain on both sides. Interestingly, though, my right side is MUCH more affected than my left (more subluxations, low muscle tone, looser joints, livido reticularis is worse, etc). As you know, I’m not a huge believer in coincidences! 🙂 Diana
Hi Barb. I now know, and have proof (please see attached pic), that I have over-sized veins on the right side of my neck. And, interestingly enough, like Dr. Diana and her son, the right side of my neck is much more affected than the left. Does anyone know if this means I have CCSVI? This vein appears with any type of neck movement (so basically every thing I do) and ALL of my symptoms are simultaneous with the neck pain and enlarged vein.
MJParticipantEwww… My nails are developing longitudinal ridging (I think that is poor nutrient absorption), redish ends, and they are flattening. Jeez, Louise. Kidney trouble? Does anyone else show this? Thanks!
Yes, all of the above. Mine also curl under unless I keep them really short. Oh, and my baby toe nails are now so thin that I think I could just pick them right off my toes.
MJParticipantAugust 26, 2012 at 4:36 pm in reply to: Did you see the new vid with a symptom list? Can you help me? #2808MJParticipantHi MJ, I can mail it to you! If you’d like to let me know a snail mail address, you can email me at DrDiana@Prettyill.com. Cool? Thanks so much!
Perfect! I just emailed you my address and I look forward to receiving the symptom check list. 🙂
August 22, 2012 at 1:22 pm in reply to: Did you see the new vid with a symptom list? Can you help me? #2792MJParticipantUnfortunately I am unable to download, open or save the questionnaire. Can anyone help me?
MJAugust 20, 2012 at 8:15 pm in reply to: Did you see the new vid with a symptom list? Can you help me? #2784MJParticipantI will make an effort to get that completed this week!
MJAugust 2, 2012 at 7:01 pm in reply to: Dry Eyes, Dry Nose and reduced sense of smell, Dry Mouth and excessive thirst. #2723MJParticipantHi Barbara.
The right ‘vein’ – lol! I do sometimes get a dry mouth – I call it ‘cotton mouth’; I just haven’t had it for a while. I think the dry eyes is just a night thing for me. It seems to coincide with severe POTS/dysautonomia during the night (especially if I get up to go the washroom – SEVERE POTS/burning up if stand up during the night coinciding with dry eyes). Hope all of that made sense – I can’t think straight right now. Too much pressure in my head/pain in my neck.
MJ
August 2, 2012 at 11:13 am in reply to: Dry Eyes, Dry Nose and reduced sense of smell, Dry Mouth and excessive thirst. #2718MJParticipantHi Barbara.
I have noticed dry eyes in the middle of the night. I also noticed blood-shot eyes during the night when they are dry. I figured it was a ‘vein’ thing, and could be related to CCSVI if I have that. I also think it is related to waking up burning hot and freezing cold, which also probably correlates with something vascular.
MJ
July 22, 2012 at 10:55 am in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2652MJParticipantYes, it sounds like you have CCSVI. Are you going to get an MRV? I hope to – I’m just having trouble getting doctors to listen to me!!!
July 21, 2012 at 3:25 pm in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2649MJParticipantHi MJ,
Yes, you’re right, basically the body will try any means possible to keep the blood flowing to the brain and if it doesn’t raise the heart rate, it will raise the blood pressure instead.I see a lot about HypOtension, where people’s BP drops on standing but not much about HypERtension where BP raises on standing. Has anyone else’s POTS developed into NMH (Neurally Mediated HypERtension)?
I have both increased HR and increased BP on standing. It didn’t develop into this – it’s been like that from the start. Funny you should ask about hypertension on standing. I am curious if having CCSVI is related to high blood pressure on standing. For those with CCSVI (and dysautonomia), does your BP go up when you stand? I think Dr. D. said in a video that hers goes up on standing, and she has CCSVI. I believe I have CCSVI – but no testing yet – and my BP goes up on standing. Or, perhaps it has to do with having a CCI? Maybe if we do a survey, we could figure out what causes BP to go up on standing lol! Or, maybe Dr. Diana already knows. For those with high blood pressure on standing, can you list your symptoms/diagnoses/anything relevant (e.g. dysautomia, POTS, CCI, head/neck injury, etc.)?
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