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- Mon Dec 22, 2008 12:03 pm
Nov 2006 I had a pacemaker/defibrillator implanted for LQTS type 2. Nov of 2007 I started for the first time in my life having hot flashes, migraines and extreme fatigue. March 2008 I had my Gall Bladder Removed. Aug 2008 I had my tonsils removed and my deviated septum repaired. Nov 2008 I had my pacemaker/defibrillator replace due to a fractured pacer lead. During the last year I have seen over 15 specialists who can not figure me out. I am still having hot flashes (that seem to be getting worse & more frequent), Migraines, extreme Fatigue and now I have blackout spells when I get too hot. I am only 32 yrs old. Can you help?
| John Kenyon, CNA
- Mon Dec 22, 2008 11:23 pm
Hi there -
While you seem to have tolerated a series of medical and surgical procedures without incident (at least as far as LQTS is concerned), this new set of symptoms, which seems, on the face of it to make no sense, may actually have some relationship with LQTS. After looking at a lot of arcane information on migraine recently, it seems there are some overlapping themes here that may suggest an unusual neurological derangement.
One type of migraine is associated with an atrial septal defect in the heart. I wonder if you've ever had an echocardiogram (one would think so, given the workup you probably had to be diagnosed with LQTS2), and if so, was there any mention of such a defect (ASD or patent foramen ovale -- PFO)? If so, there could be some sort of obscure relationship between the LQTS and the migraine. Since migraine and hot flashes/flushing are also often seen prior to the onset of the regular menstrual period (as well as in premenopausal women), these two symptoms, which are new for you, might overlap some subtle atrial septal defect, which in turn could be related to the development of LQTS2, since both are heritable abnormalities.
This is all pretty wild speculation, but it would seem something is affecting a broad swath of neurological function in your body, and since migraine often involves one or more of the cranial nerves (V, VI and/or VII), two of which can also, if abnormally stimulated cause lengthening of the QT interval, a suggestive pattern starts to emerge here, even though there is no well-recognized syndrome which alone would account for all your new symptoms and LQTS; they do have some things in common, and I think it might be worthwhile to have a neurologist explore these connections.
This is a pretty unusual syndrome you're experiencing, and I'm sure you've been seen by a neurologist as well as cardiologists, but needless to say, the addition of these symptoms is not something anyone would want to have to deal with, and since you've tolerated invasive procedures and surgeries so well, I'm led to believe the LQTS2 may just be secondary to something else (and so perhaps not actually type 2).
I'm guessing, but the overlap of symptoms is far too "interesting" to ignore. Hopefully you can be seen at a major medical center where neurology is an especially strong suit. I just suspect there is some central cause for all this, and it may just require the right pair of eyes to discover what it is.
I hope this is helpful. It's certainly vague, but we want you to find an answer and hopefully a solution. I hope you'll follow up with us here as needed and keep us updated as well. Best of luck to you.