August 25, 2015 at 9:28 pm #894kfeltyParticipant
I was first wondering if a carotid Doppler is at all useful in ccsvi… I know the standard test is an mrv and mra, but I am scheduled for a carotid Doppler and I know they focus on the main carotid, internal and external carotid and not normally the jugular vein… But since I do have EDS I was wondering if this carotid Doppler is at all significant???
Secondly, I am aware that potscare has open and I would love to be apart of that journey but unfortunately my finances won’t allow me 🙁
I have hyperadrenergic pots, EDS, and the drs suspect mast cell activation disorder as I am taking zyrtec, Zantac, and gastrocrom. For pots I am taking ddavp, diamox, low dose cymbalta and xanax at bedtime. I take many supplements… A buffered vitamin c powder with magnesium and potassium and calcium… Coq10… Alpha lipoic acid … L-glutamine… A good multivitamin with b complex.
The main thing I was wondering if someone had any suggestions for the debilitating fatigue… Not only am I tired and wired most of the time and suffer from insomnia and need xanax at bedtime to sleep… But I also get EXTREMELY depleted and cannot stop sleeping and even lying down is exhausting… It feels like heavy cement bricks on every muscle.
I think what exacerbated my symptoms was a pneumothorax caused by a trigger point injection in 2013… And I am having severe complications from the chest tube.
I lost my career… I used to be a diagnostic medical sonographer and I just want to get my life back… Next month I’ll be 27 and I’ve been out of work since last year…
I just really need help trying to get this fatigue to diminish…
Dr Diana, what helped cure your pots and fatigue? I’m willing to try almost anything!
KellyAugust 28, 2015 at 9:48 am #5645ourfullhouseParticipant
As far as the doppler ultrasound goes, the one you are having is arteries and CCSVI is about the veins. Two very different mechanisms going on in the two systems. So I don’t think it will be of any help if you are wondering if it will help you know if you have CCSVI. I had the CCSVI doppler ultrasound and have had two CCSVI venoplasty procedures, so if you have any other questions just ask. My veins are very abnormal (I have EDS too, so is that the reason?) with webs across one and my valves are malformed. That’s besides the stenosis all the veins they look at for CCSVI have. I felt really good after my first treatment, but my veins won’t stay open and there are not any safe stents for the jugulars and azygos veins.
I totally understand about the fatigue you have. It’s awful. Some days I just have to take caffeine pills to be able to get out of bed and get anything done. One thing I found out that has helped some is that I have defects in the MTHFR genes, which means I don’t have the ability to convert/absorb B vitamins from food/supplements. I have to take special formulations of B’s that my body can actually use. That makes a difference for me. I used to take B complex every day and I would actually feel worse after taking it. Or I would go get nutrient IV’s, loaded with B vitamins, and though “everyone else” feels great after one of those IV’s, I would feel ill and more fatigued. My dr tested my MTHFR genes and voila there was the problem. I mostly take activated folic acid (there is an Rx form called Deplin – but only the name brand, not the generic, works) and activated B12 injections.
So sorry you are feeling so bad and unable to work
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