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Thread: three failed blood patches, now a diagnosis of borderline-POTS? any advice?

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    Default three failed blood patches, now a diagnosis of borderline-POTS? any advice?

    OK, 6.5 months of symptoms here. I was diagnosed with a suspected csf leak - I have a mild headache, blurry vision, light-headedness, all 100% positional and completely resolved when I lie down. CT and MRI scans were negative. Two blood patches didn't do anything. I went forward with a third blood patch (and, with my doc's blessing, I took diamox before the procedure). Unlike the first two, this blood patch made me feel worse! My headache, which was a ~2 before the blood patch, became a 4-5 after, and the light-headedness was much more pronounced. It's still positional, though somehow it "feels" different. Any ideas why this could be? The most common cause of post blood patch headache that I read about is having a rebound high pressure headache, though my doc tells me that the postural nature of a high pressure headache would be reversed, and I would feel better standing up.

    Part 2: after this blood patch, I asked my neuro to refer me to a cardiologist, who set me up for holter testing (negative) and tilt table testing. I was told that in the tilt table test I qualified as "borderline POTS." My heart rate increased from 62 supine to 94 upright within 10 minutes, though my heart rate went back down after this initial jump. The cardiologist recommended a trial of beta blockers, though he wouldn't say with any confidence whether he thought that they would help my symptoms.

    Questions:


    How informative is it that, after each of the three blood patches, I had no improvement, even transiently? I've read that people who have symptoms due to low csf pressure very regularly get some benefit in the immediate aftermath of the patch. Is a csf leak pretty much ruled out?

    Any ideas why I would feel worse after a blood patch?

    Prior to the tilt table testing, several physicians have measured my heart rate lying down vs. standing, and none of them noticed a striking increase. I've also measured my bp and pulse at home, and I can stand for hours without my pulse or bp doing anything screwy. Is this inconsistent with the POTS diagnosis?

  2. #2
    Community Member dagaz's Avatar
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    Quote Originally Posted by darpa6132002 View Post
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    OK, 6.5 months of symptoms here. I was diagnosed with a suspected csf leak - I have a mild headache, blurry vision, light-headedness, all 100% positional and completely resolved when I lie down. CT and MRI scans were negative. Two blood patches didn't do anything. I went forward with a third blood patch (and, with my doc's blessing, I took diamox before the procedure). Unlike the first two, this blood patch made me feel worse! My headache, which was a ~2 before the blood patch, became a 4-5 after, and the light-headedness was much more pronounced. It's still positional, though somehow it "feels" different. Any ideas why this could be? The most common cause of post blood patch headache that I read about is having a rebound high pressure headache, though my doc tells me that the postural nature of a high pressure headache would be reversed, and I would feel better standing up.

    Part 2: after this blood patch, I asked my neuro to refer me to a cardiologist, who set me up for holter testing (negative) and tilt table testing. I was told that in the tilt table test I qualified as "borderline POTS." My heart rate increased from 62 supine to 94 upright within 10 minutes, though my heart rate went back down after this initial jump. The cardiologist recommended a trial of beta blockers, though he wouldn't say with any confidence whether he thought that they would help my symptoms.

    Questions:


    How informative is it that, after each of the three blood patches, I had no improvement, even transiently? I've read that people who have symptoms due to low csf pressure very regularly get some benefit in the immediate aftermath of the patch. Is a csf leak pretty much ruled out?

    Any ideas why I would feel worse after a blood patch?

    Prior to the tilt table testing, several physicians have measured my heart rate lying down vs. standing, and none of them noticed a striking increase. I've also measured my bp and pulse at home, and I can stand for hours without my pulse or bp doing anything screwy. Is this inconsistent with the POTS diagnosis?


    I'm sorry your leak wasn't resolved.. however I have seen posts about headaches after the leak being resolved. Some think it's from our bodies adjusting the amount of CSF it creates to compensate for the leak. Some feel it just takes time to adjust back to normal. I hope you are resting, laying down as much as possible, no straining or lifting for at least 6 weeks to give it a chance to heal... I have had 17 brain surgeries including attempted repairs for my leaks... cranial.. I hope you have better luck!!!!

    Dagaz
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

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