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Saw Dr. Phillips Today at UVA


JacobyD
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I traveled to Charlottesville, Virginia today to see Dr. Lawrence Phillips who spent a great deal of time reviewing my case history and performing a series of 'standard' neurological tests. I also had my second tilt table test today, which I passed. This was the good news (you could even consider it great news).

My first tilt table test almost three years ago was sheer ****, end ended after just 3 minutes. This time I was able to remain 'upright' with relatively small changes in my BP and HR. My HR ranged from 79 to 125 or so bpm, and my BP ranged from 100/70 to 120/80.

The bad news was that he did not know what to make of my throat problems. As some of you know, I have frequent episodes where I can't instigate a swallow and began having 'throat closing' episodes beginning almost a year before my 'day of sudden onset' of POTS. His take on it was that I have become deconditioned and oversensitive to what he considers to be 'normal' swallowing activities (based on my tests from last summer at the University of Texas).

He felt that with a slow increase in exercise and a decrease in my Lorazepam (Ativan) intake, I should begin to see dramatic improvements in my health which should include my throat problems. I would like to believe this is the case but I still don't understand why I get these frightening 'throat spasm' episodes out of the blue even when I am not thinking about my condition.

Oh well. I will give it my best shot but I went into this appointment wanting to focus on nothing but my throat problems. The visit was well worth the trip, and Dr. Phillips was very thorough and knowledgeable regarding my autonomic situation.

The theory that I am 'oversensitive' to the natural activities of my throat might even be true, but it sure would be nice if just one doctor had the heart or the huevos to take it to the next step and try and help me with this debilitating problem. Even just a "Here's the name of a great speech therapist" or "Let me give you the name of someone who can help you with tapering off your Lorazepam". One more hopeful trip (but very thankful that the POTS symptoms are fading) that has ended without answers. Foiled again....

-Dan

PS: Don't get me wrong, I am happy about his take on my autonomic condition. I am also going to try what he suggested, and hopefully will be able to post here in a few months that he was right on the money and my nightmare is over!

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Hi Dan, It sounds like your heartrate and BP were very good during the TTT. That's great! I hope your throat spasms decrease as well. Knowing what you do now, would you ever recommend that someone start on tranquiliziers if they haven't already? Everyone seems to have different ideas on this.

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I would say NO WAY! Unless they were used for less than a few days or only small doses as needed. Everytime I told one of my doctors about a new or increasing symptom, they replied "just take another mg of Ativan every day". Nice. Live and learn!

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Dr. Phillips thinks that because I had an apparent 'viral onset' that I am one of the lucky ones who eventually 'recovered' - though I have a long way to go before I am close to being fully functional again ;)!

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Dan, at some point, perhaps the throat spasms will resolve as well? (hey, a girl can hope! ;) )

Glad that you passed the tilt, now lets hope for the rest! And until then, are there any effective anti spasmodics that help? Have you tried hyoscyamine (levsin), which I take for GI spasms? Isn't the throat controlled by smooth muscle too, just like the rest of the GI tract? Perhaps that might help you???

Nina

Edited by MightyMouse
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Congratulations on the sucess of your tilt table test. It's good to focus on less symptoms as we continue our healing journey.

Two things came to mind as I read you post so I'll pass them along, you can take both with a grain of salt and if something strikes you as interesting you can look into them further:

I have been doing quiet a bit of mind/body re-programming and there is something called EMDR Eye Movement Desensitization & Reprocessing and it may be able to help us not go down certain neural paths that we have grown accustomed to traveling. I first read about it on the following site:

http://www.traumahealing.com/index.html but there are lots of sites that have therapist links: http://www.emdria.org/ and it may be covered by your insurance. (Always wishful thinking.)

And while you didn't mention panic or anxiety in your post, I know that the kind of throat spasm you described is very common among those of us with panic disorder. Perhaps the treatment may be the same as well. One of the web sites and programs I like is healingpanic.com. The web site has lots of free stuff and information about cutting down on Ativan etc. and how it is all connected.

As I said, these two things just came to mind -- they might not be relevant at all.

Good thoughts,

EM

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Thanks for all the support and great suggestions! I have had some very detailed swallowing tests, including motility and real-time swallowing x-rays and barium swallows. I have been scoped by my ENT about 7 times, and choked with an endoscope 3 times by my GI doc. Everything seems to be structurally sound.

I have also investigated the panic and anxiety angles. My psychologist does not believe I am suffering from panic disorder and can't conclude that any anxiety I may suffer is the result or cause of these throat episodes.

I am going to do my best to taper off the Ativan, or at least lower my dose to something more reasonable over the coming months. I have already increased my exercise routine.

I would like to get some cognitive behavioral training, which I know very little about. I am going to set that up with my psychologist, but would really like to find a home-based CD or DVD based version so that I can work at my own pace. Don't know if this kind of product exists, or if it would be a good idea to try and treat myself. I'll have to do a bit of research on the web today! Thanks again for all of your support.

Nina- I am going to ask my doctor about Levsin. That's one I haven't tried yet. Since I don't have stomach muscle spasms my only concern is that it would slow my motility, but I speak out of total ignorance of the drug ;). Thanks!

EM-I'm off to check out the links you posted. Thank you so much.

-Dan

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Dan, I think it only slows motility temporarily--but you should check. I'm allowed to take the drug every four hours, hence, my guess that it's not long acting. You and I share the gastroparesis issue, but yours has been way more severe than mine.

Nina ;)

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