How Is Temporary Silent Long Qt 8 (timothy's) Syndrome Diagnosed

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doppy Says:


I have been having black outs and lying in opp positions for long periods of time the 1st time was 24 hours and my kidneys dried out my createnine was 800 and i needed 3 weeks of dialysis and my muscle CK was 44000, fortunately i made a miraculas recovery and was only in the hospital for 3 weeks. Two months later the same thing happened this time i was lying in a position that i cut of the nerves to my legs do i couldn't walk and the ambulance had to break the door down to get me, my renal function while nit good didn't require dialysis.The neurology Dr's said that my nerves would slowly regenerate themselves with intensive physio. I lice alone and ive been lucky that both falls have been on carpet not in the bathroon or hut my head any where. The cardiologists asked alit of questions abut famult heart history and ther is really no more ischemic heart diease than in the generalatuin 1st world population, however my maternal granmother ftoppped dead in 1975 at the age of 56 with no explanation the autopsy showed that she was developing uschecic heart diisease but not the caise of dearh, the cause of death was really determined the coroner riles that a probable catastrophic heart attack probably caise by stress or drug interreactions , bizarly the dame thing happened to my maternal uncle two years ago at the age of 69. Im 42 and they think that i may have long QT syndrome and there is a list if about 400 drugs that can set it off and i happen to be on 4 if them. Both blacki outs happened about 11am ,. i am hoples in BD dodong so ive gotten into the habit of taking all my meds Marne my Dr's know this and have no problem and have been doing this fpr years. So as to my Meds i need to say i have HIV because i was drugged and date raped at 16 which had basically ruined my life my college funds where spent on medical trails and as a result i suffer many ongoing side efects and Phyzer., MercSharpDone, Chiron, Elylilly. Hoffman LaRoche and other deny all responsibility so i live in poverty on disability. In 1986 date rape didn't exist it was called your own stupid fault and was locked up for 2 fays foe wasting police time they had to let me gi because i was bleeding profusly and needed a blood trandusion. Anyway to my meds:

Kaletra(laoponivir&ritinivir)
Raltegravir
Entegavir
Iberstatin (Avapro) 150mg
calcium 1000mg
Magnesium 200mg
lugols 15% iodine 2 drops
Melatonin 2mg
Ostolin (Vit D)
Colloidal Silver 10ml
Clexine Sub Cur inj's. 120mg
Nortryptaline (Alagron) 100mg
Methadone Syrup 5mg/ml i take 22ml or 110mg
Diazapam 20mg
Pregabalin (lyrica) 600mg
Ketaconazol (trans dermal patch)
Bartrim DS (PCP Prophylaxis)
Bactraban Ointment ( MRSA lessions)

so at least 4 of these meds can set off long QT im really scared that ive dought so hard to stay alive 42 hospital admissions iver the last 26 years all the hospital staff know mw by name im not sure if this is a good or bad thing it has it's adcantage because i have no insurance they usually dont make me wait 18 hours in the ER waiting room LOL. HELP!!! ANYONE GOT ANY IDEAS AT ALL



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Verwon Says:

Hello, Doppy! How are you? I'm very sorry about everything you've been through.

Have you tried switching out the possibly culprit medications to see if anything changes, or if it stops happening?

That might be the simplest way to find an answer.

With the kidney issue, have you also been checked for dehydration? How much fluid do you take in each day? Dehydration could also cause these types of issues, in some cases.

Does anyone know how this syndrome is diagnosed?

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wherearecompassionatedoctors Says:
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I know it's been a long time since this question but someone else may have a similar question. I doubt you have long qt syndrome. I have it and it is found with a simple ECG. If you were hospitalized for 3 weeks I would guess you had an ECG. It was found in me after going to the ER thinking I was having a heart attack.

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