Update & Questions About Underlying Disorders

[LastUnicornLady]

Well, late last week I posted about migraines and my upcoming doctor's visit, so I thought I would give a little update on how that went- not well. He basically said that we've tried the only two meds that he's comfortable working with- Florinef and Midodrine. I got some relief from the Florinef, but reacted very badly to the Midodrine. It's definitely not the progress that he would like to have seen, but he said that there's not really anything else he can do. He was very nice and gave me a few tips like elevating the head of my bed, doing leg exercises while lying down or sitting, etc., but I left the office feeling very discouraged. Basically we'd sat around for an hour and forty-five minutes to hear basically nothing. He assured me my heart and lungs are fully functional, and said that the migraines are a normal (if there really is such a thing) part of POTS. Thank you, Doctor.

I don't really have anything against this guy. He's nice, he doesn't talk to me like I'm stupid, and he doesn't try to down-play what I'm going through. He made it very clear the wasn't discounting my suffering, and he assured me that this wasn't psychological, conversion disorder, or my fault. But no one really likes to hear that it's a lost cause.

We had talked with another doctor recently, because we're really interested in natural treatments, essential oils, etc, and is a doctor who actually uses those methods as well as conventional therapies. He said that he had a few other patients with similar situations that he was treating, and also mentioned trying to find out if there was an underlying condition that might be causing this not to respond to traditional methods. I'm not sure exactly what he mentioned, but it was at least investigating EDS (or something like it), and one other thing that I can't remember... I think he sounds like he might be worthwhile to see, and would actually be interested in making him my main care-provider.

He is the first doctor I have talked to who was actually interested in looking for a cause, and not just ruling out any "serious" heart problems. I know that a lot of POTSies also have other health issues that either cause or contribute to their POTS, and I was wondering if you guys would be willing to share info about related conditions that you've been diagnosed with. I know about EDS, but I also know that there are other conditions that mimic or cause POTS, and was hoping some of you could share.

Until then, we're going to try slowly getting rid of the Florinef to try the Midodrine on its own, and see how that goes. I also got a pair of compression stockings, and have seen noticeable improvement in the fainting while wearing them.

[IceLizard]

Hello Anastasia. When I was first diagnosed, the doctor had me stand up and took my pulse. "Yes, you have POTS," he said, "but, there's not much you can do about it." Since then I have travelled to see other doctors who I hoped had some ideas about what to try to get me more functional. I did get to see Dr. Blair Grubb in Ohio, and he was the one who discovered the EDS. This diagnosis hasn't really helped with my treatment of POTS, yet, but it has helped explain other symptoms that I have been having. It also explained the chronic pain and fatigue my mother struggled with, and the extreme hypermobility of my sister. Currently I am at the point where I want to see more improvement in my functionality, but I am not sure what to do next.

[JuneFlower]

Sorry to hear about this visit. We had a somewhat similar visit with my daughter's cardiologist last monday. In your case, I would seek out another dr. There are many other medications to try depending on your situation. It doesn't sound like this dr is knowledgeable or comfortable in treating you or finding the original cause.

My daughters cardiologist was bale to improve her blood pressure to 85/46 (one measurement). He said this is acceptable. But she feels awful and still can't go to school. He says this is all he can do medically. I am having her tested for Addison's disease. This is often confused with POTS. He did say she had dysautonomia but not why. She is also losing a lot of weight and no one can explain it. I get the feeling some drs think she is anorexic but she isn't. She love sweets and is not eating any differently than she always has.

I would keep digging for answers. It's your life! Good luck and keep us updated!

June

[Christy_D]

_{My son was diagnosed with POTS in 2009 and while some medications helped some of his symptoms, he was still bedridden with debilitating nausea. No one ever told us what the cause of his POTS was, they guessed it was a huge growth spurt he had in the 8th grade. He continued to get worse and worse instead of better, so I kept looking for answers. We took him to Dr Afrin in South Carolina and had him tested for MCAS in April 2012. He does have MCAS and we were finally able to find a medication to help him in June 2013. We were told POTS is a symptom of MCAS. I would keep looking for answers if you are not getting any better. We were trying to treat a symptom instead of the root problem, which was the MCAS.}

_{Also, my daughter was diagnosed with O.I. and small fiber neuropathy. Once again, they weren't looking for the reason for this. Her internist sent her to a geneticist and she was diagnosed with EDS. My son my have it as well, his elbows hyper extend. It is not as uncommon as you would think to have EDS/MCAS/POTS all at the same time. I think if we wouldn't have looked for more answers, my son would still be bedridden today. Incidentally, while at the Mayo Clinic with my son going through their pain management program, they told parents to stop going to specialists and 'fixating' on the illness. Thank goodness I didn't follow their instructions.}

_Christy

[JuneFlower]

Christy- thank you for sharing all your story. Sorry it was such a struggle. We are in the middle of the that same struggle. I am glad you shared that info about the May Clinic. I was researching that program and a bit wary because they didn't have any diagnostic information. I don't think we will go there now.

June

[Christy_D]

June,

I noticed that the program at the Mayo helped the kids that had pain associated with their POTS, but wasn't all that helpful with those suffering with GI issues and nausea. My son made some friends while he was there that he kept in contact with and those with nausea/GI issues still weren't able to attend school regularly or at all as was my son's case. I find some of their expectations completely unrealistic. Our local psychologist preferred the 'wade in slowly' approach.

Christy

[davecom]

Absolutely should try to find your underlying cause. More than 50% of POTS cases are caused by an underlying small fiber neuropathy (Mayo's numbers). Have you seen a neurologist? More importantly, have you had a skin biopsy or QSAR?

[JuneFlower]

Christy,

Wow, yeah, abdominal issues are very big for my daughter too. It doesn't sound like she would do well there.

davecom,

I didn't know that statistic. I will keep digging too.

June

[IceLizard]

I, too would like to know more about what is causing my problems. When I saw Dr. Grubb about 9 years ago, he basically said, "Oh, you have dysautonomia because you have EDS" and left it at that. I think there is more going on and if those underlying causes can be found, they can be treated.