New Here. Pots, Eds, Mg?

[kt42487]

Hi all, I'm a newbie. I was diagnosed with POTS last October after months of fighting a GAD diagnosis. After finally getting my internist and cardiologist to stop looking at me like an insane hypochondriac it is now believed that I my POTS is secondary to ehlers-danlos. I score a 7/9 on the beighton, have pelvic organ prolapse, mitral valve prolapse, early onset varicose veins (age 17), gorlin's sign (my tongue touches my nose), flat feet, tmjd, knee tendon repairs, reoccurring shoulder bursitis and subluxations of my hips, knees, ankles and shoulders, and now POTS. All of these joint problems and I am old 25 years old. I am back and forth on whether I would like to proceed with genetic testing as I am afraid to be labeled for health insurance purposes. So my questions: Any other EDSers out there? What works for you to control your POTS symptoms? I find I mild relief from fludro and atenolol. I have tried bendzos, SSRIs and midrorine all of which were a total disaster. My issue is, if I do have EDS then being on fludro may deteriorate my joints and skin even more, yet it is the only thing thus far that has allowed me to get out of bed and I am single mother to a 16 month old little girl (her father is deceased). Another question is in regards to myasthenia gravis, I noticed that there is a medication that is regularly used for MG that also helps with POTS. I have been having a choking sensation as well as facial numbness/tingling, sudden onset lazy eye and occasional dropping eye lids ( feels like when Novocaine is wearing off all over my whole head). During my last visit to my internist I brought this up and she said she was able to palpate the top of my thymus in the hollow of neck and I have a follow up to investigate this on 1/30. I am wondering if any one knows of a connection between MG and POTs or MG and EDS or all three. Any and all info. is greatly appreciated. Wishing everyone a symptom free day!

[Katybug]

Hi kt,

Welcome to our community. I have POTS, EDS, and MCAD. I don't feel great right this minute so will write more later but in addition to participating in this forum, which I highly encourage you to continue, another great site for EDS info is ednf.org. that site also has a forum called Inspire with people very educated on EDS. Between these 2 you should be able to get lots of good info. Will try to come back and answer some of your more specific questions tomorrow. Take care.

[kt42487]

Thanks Katie (I'm a Katie too). I'm sorry you're not feeling very well. I'm in the same boat and feel like I am having a constant heart attack. I tried the EDS board and didn't get very far. The aches and pains that come with hypermobility pale in comparison to my POTS symptoms so I ended up on this board. If I could figure out how to manage the POTS I would be a functioning person again. It's such an uphill battle.

[Katybug]

Yes, I agree...I could live a pretty regular life with just the joint/soft tissue pain but the POTS/MCAD symptoms and the migraines are dibilitating a lot of the time. I am sorry, I don't know anything about MG so I can't speak to any of those questions. I was on fludro and it also helped me but after a bad reaction to a high dose of prednisone, I was taken off all the steroids. I also had to stop taking metoprolol, a beta blocker, once we figured out that I had MCAD because it turned out that it was making my already impaired breathing/shortness of breathe, worse. So, now I am on Verapamil, a calcium channel blocker and that seems to be helping a little bit. I am on a low dose and will have my first cardio follow up soon since starting this drug so I suspect we may increase the dose to see if it will continue to make things better. Many of us have talked in the past about how we didn't feel like increasing our salt and fluid intake was helping us until we stopped or weren't conscientious about it, then...we got the message the hard way. You may want to try compression garments...socks, full hose, abdominal binders...if you have pooling in your lower body. I'm not sure how much you know, so sorry if any of this is repetitive. You can tell if you are pooling mostly by laying down for a while and then observing the color of your legs. Then, stand for 10 minutes or so (as still as possible, no countermaneuvers) and observe the color change every few minutes. If you see your legs become bright pink/purple then you are probably pooling and might find compression garments helpful. YOu talked a lot about your EDS symptoms, but not so much about your POTS symptoms. If you tell us what your symtpoms are, we might be able to give you more suggestions specific to controlling the symptoms you have.

Katie

[kt42487]

Thanks for the info on compression garments. I may look into that. I seem to pool in my pelvic region. Pulse supine is 60-70, sitting 115, standing 120. So going from a laying down to sitting position is more difficult than going from sitting to standing and with chronic pelvic pain since age 15 and pelvic organ prolapse it makes sense that that would be were the blood is going. Aside from the general dizziness, lightheadedness, blackouts that seem common with all of POTS patients my most annoying POTS symptoms seem to be very neurological; numbness in the face, random locking of my joints, shaking, pressure in my head and neck (as if there is too much blood in there). This is why I have been curious about MG b/c most of my most annoying symptoms involve my face, head and neck and I am wondering if they are not actually POTS symptoms. I have browsed the forum and I guess would have to consider myself lucky in the sense that I am able to get out of bed in the morning, do over an hour of cardio exercise a day, chase a baby around and attend college full time. Yet, I would love to wake up one day and not have to push myself through the day or worry about those annoying palpitations. It is my understanding that those that have POTS due to EDS will go into remission and then continue to have flare ups during various times through out life, I am hoping that there is a chance that this debilitating syndrome will leave.

[Katybug]

Many of your neuro, facial, and head symptoms sound a lot like what most of us describe. As I said, I don't know about MG but it is not uncommon for people with EDS to have Chiari malformations and /or spinal fluid pressure issues. My geneticist sent me for an upright MRI of the brain and cervical spine. I have facial swelling and drooping with my migraines, a fluttering in my ear drum that is worse with fluctuations in the barometric pressure, and and a seriously positive Rohmberg test (simple balance testing...mine is really bad these days. I sway all over.) I don't have chiari but we did find serious deterioration of most of my cervical vertebrae and 3 discs that are starting to impinge on my spinal cord...so that is leading to an appt with a neurosurgeon. Its worth checking into having the MRI...make sure you get the upright MRI (which you will have to find a special lab for as most MRI places don't have this machine.) The compression may help you. Getting enough rest (I know that's easier said than done) is really important ...it's hard for your heart to basically be in aerobics class all day.