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July 20, 2012 at 11:24 am in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2645MJParticipant
Your blood pressure can also increase with POTS. That is the case for me. Mine increased by 34/32 on standing. You may want to video tape your results; my doctor did not believe me when I told her I went from 60 to 120’s on standing. Once they get it in their head that you’re a hypochondriac b/c of all the weird symptoms – game over. It was my ND (Naturopathic Doctor) that took my pulse and BP lying down and standing and confirmed the POTS. I just haven’t had any testing and the MD’s roll their eyes when I mention an ND diagnosed me.
July 19, 2012 at 7:53 am in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2642MJParticipantPS Thanks for letting me know about getting the cardio report from the Halter Monitor company. I’ll put it on my very long list of things to do lol!
July 19, 2012 at 7:52 am in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2641MJParticipantI think you should take some of the handouts from this web site to your doctor. You could also ask him to read The Driscoll Theory (I am about to order the paperback for docs to read) – which will cover Diamox, etc.
Also, I can TOTALLY relate to what you are calling a ‘short circuit’. I sit around and can’t really do much, thinking of all the things I’d like to do – like clean the bathroom, unload the dishwasher, vaccuum, etc.. And not very often, but once in a blue moon, I am surged with energy. My mind is quick (no brain fog), I am totally focussed and it goes something like this…at a million miles per hour, so read quickly. “Okay, what do I do first? Vaccuum, bath the dog, dust, load of laundry, kitchen, uh oh – slowing down a bit, better hurry…clean bathroom…uh oh it’s over.” At least I got those things done in such a short amount of time but then back to brain fog, slow motion, no energy, don’t want to do anything. I wonder if this is what Dr. Diana is referring to when she talks about the bipolar appearance. It’s like highs and lows of functioning (mostly lows for me).
July 18, 2012 at 4:44 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2635MJParticipantDoes Eds cause hard knots in your temples and in the back of your head.
I’m not sure, but I have EDS and I do have some sore spots and a bumpy sore spot on the back of my head. If I press on them, I get pain behind my eye (on the same side I press) and pain running down my neck (on the same side I press). I can also feel my heart POUNDING (I assume where the veins are) on the back of my head on both sides if I put my fingers there – does anyone else have this?
July 17, 2012 at 7:53 am in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2628MJParticipantFrustrated, I bought an iPHONE, Digifit connect 2, and a Garmin chest strap and paid for a Digifit iCardio download from itunes. I strapped that strap on my son, put the Connect2 into the bottom of the iphone, started the iCardio, and put the phone in my son’s cargo pants pocket and sent him to school. I met him at lunch and VOILA! VINDICATION. PROOF!!!! Without any PE, his heart rate was as high as 150 and averaging 120 for most of the morning just sitting in class!!!! I took my son and my iphone to the doctor and showed her the heart rate chart and Voila! That Visual chart got her attention and we left with a referral to a pediatric cardiologist who diagnosed him with…. POTS. But she doesn’t care for POTS patients so she is referring him to a neurologist….
I think Dr. Diana’s latest video is spot on.. we have so many more dysautonomic symptoms than “just POTS” that saying “I have dysautonomia” rather than “I have POTS” may be helpful for us.
What a great idea; and so inspiring. Perhaps I will request the ACTUAL results of the Halter Monitor – meaning, not just the write up that says everything is normal. This at a min. should show a tachycardia and arrhythmia on standing. If I can’t get my hands on that information, then I may try what you did. ACTUALLY, WHAT YOU JUST SHARED MADE ME REMEMBER SOMETHING! OMG – I have ON VIDEO from a few years ago, me wearing a Polar heart rate monitor (with chest strap). The video shows CRAZY fluctuations in my heart rate, but unfortuanately, the Polar does not track/detect arrhythmias. I remember one video my HR went from something crazy like the 120’s to 45 just because I bent over.
I also have a video on my phone; I call it CRAZY VEINS. My veins – all over my body – are WAY distended with blood pooling in hands and feet. So much so, that it makes me SOB (short of breath). You have to see it to believe it. And when I raise my arm, which drains the blood that pooled in it, I am no longer SOB. I’m not technical, so I’m going to try to get some help and put the video on YouTube, and then I’ll post something here on the forum asking people to watch and comment. If my veins are that huge, I can only imagine what an MRV would look like!
It’s just so exhausting; the energy it will take to do all of this…but maybe this time it will pay off.
MJ
July 13, 2012 at 7:11 pm in reply to: DOCTOR SAYS NO DIAMOX W/O POTS CONFIRMATION, BUT CAN'T GET PAST HALTER MONITOR #2596MJParticipantHi. Thanks for responding and thanks for all of your input. Wow, sounds like your body is really out of wack. I actually figured out the POTS first. One day I was SOB (short of breath) just from standing up and walking to the kitchen. So, I took my pulse and realized I was going from 60 to about 120 or greater every time I stood up. My ND (naturopathic doctor) confirmed that I have POTS by taking my pulse and blood pressure supine and standing, but I have not had a confirmed diagnosis with testing, etc.
It was the POTS research that led me to EDS, and that’s how I figured out I have EDS. At least I have EDS confirmed.
I went to emergency once because one side of my body was FREEZING cold and the other BURNING hot. My heart was pounding so hard in the burning hot side. I went to emerg. b/c I have never had my heart pound so hard on just one side of my body; usually it’s both. My veins were popping and I felt so ill every time I layed down. Anyway, the ambulance attendants hooked me up and said I had a bradycardia laying down, my HR went up to 75 just from sitting up and then over a hundred immediately on standing. Hello? Does this not indicate POTS or at least indicate that it should be looked into? They made me sit right away; I’m sure it would have went higher. And the Internist I saw about the Halter Monitor is the doctor from the hospital I was sent to! So is there no communication? Did she not read the ambulance report? She did nothing further, as the Halter Monitor came back normal.
July 13, 2012 at 4:13 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2587MJParticipantHi Barbara. This vein on my MRI – it is the only vein showing on the MRI and I didn’t think that veins showed up on MRI’s. This is why I am concerned (well, and plus that is where I have sharp pains). Do you know if it is normal to see a vein like that on an MRI (I know, difficult question w/o seeing the MRI)?
MJJuly 13, 2012 at 4:07 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2586MJParticipantThanks Barbara. I checked out a few videos. Will check out more, but it is making my neck sore lol!!! I actually sent Dr. Diana a copy of my MRI, but I know how crazy busy she is. Dr. D, can you just tell me if you received my MRI on CD? I sent it the old-fashioned way and I just want to be sure it did not get lost in the mail. Please take your time in looking at it – I know you are spreading yourself a little thin. Please take a look whenever your schedule calms down. Much appreciated and many thanks. MJ.
July 12, 2012 at 6:59 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2580MJParticipantHi Barbara. Thanks for your reply. I looked up some MRI images on line, and I’m not sure, but yes, it could be the transverse sinus. Why, does this mean something?
July 11, 2012 at 10:26 am in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2573MJParticipantHi,
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
I believe I may have CCSVI, but nothing is confirmed. I do have most of my pain on the right side, and of course, if I have the enlarged veins, I don’t know which side, but suspect the right. Does anyone know anything about MRI’s? My MRI shows a huge vein on the right side of my head above my ear and going up and across the back of my head. Perhaps this is normal, but I do get very sharp pains on the side of my head above my ear where it shows that vein. It’s a very different kind of pain; it feels vascular to me.
MJParticipantI’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?
MJParticipantI 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
MJParticipantHi there. I had a Right Axis Deviation on my EKG. They did a chest x-ray to look at my lungs to see if that was the cause, but it came back normal. No further investigation was done. I have EDS & POTS.
MJMJParticipantThanks for letting me know about the Headmaster. Appreciate it. I wanted the Philadelphia, but got talked into a Marlin Custom Rigid, because the height is adjustable, and sometimes when I can’t hold me head up I need my chin lowered. I don’t have it yet, as it is on order, but I’ll let you know how it goes! I have a feeling I may still need the Philladelphia.
MichelleMJParticipantI also have no curve in my cervical spine and have been managing a couple of bulged discs with chiropractic for about 8 years now.
I have the opposite problem – I have too much curve in my neck. So much curve that my head tilts back and I can’t even hold my own head up. Very painful. Does anyone else have this problem of too much curve in the neck? Why would some EDSers have no curve and others too much?
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