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First I would just like to say thank you so much to Dr. Diana and Ms. Barbara for their responses and advice. I ended up back in the hospital after I developed very sever Neuro symptoms similar to parkinsons’ disease. It took a lot of persuading but they finally agreed to consider the increased inner cranial pressure. They did a LP and drained 16cc of CSF and I instantly felt relief. My starting pressure laying on my side was 26 and they got it down to 15. They immediately started me on diamox 500mg BID. I am not convinced that the dosage is quite where it needs to be, but I am still very hopeful that this is the right direction. I have had mild side effects, but nothing compared to what I was living with. My IST has completely disappeared and my heart rate has consistently been in the 70’s- low 90’s, way better than the 150’s-180’s. It is so amazing!!!! I have stopped taking the beta blocker, HCTZ, doxycycline. I am just so blessed and happy and relieved! The Drisocoll theory has saved my life! There just are not enough words to describe my gratitude.
Best wishes to everyone,
JessicaAwesome news, Jessica! Your case is (amazingly) not atypical, yet this presentation is often misdiagnosed (and many patients undergo some likely unnecessary wicked neurosurgeries — yikes). We are all SO HAPPY that relieving your ICP with Diamox is providing so much relief. I hope your doctors give you lots of control of fiddling with your dose — it took me about a year to settle on a dose. A few years later, I was able to go off of it. We’d all be grateful to you if you could share your story (social media has some good outreach) — so many folks are suffering needlessly… 🙁 It sounds like you are headed in the right direction, though! (and yes, Barb is great, isn’t she?) Big hug, Dr. D
Great news Jessica, glad to be of help. Just a pity they didn’t put you on the Diamox first though, then maybe the lumbar puncture could have been avoided – but maybe not in an emergency situation!
Jessica’s original post can be found at:-
http://prettyill.com/forums/viewthread/1015/#4337Anyway, glad you’re feeling much better, let’s hope you continue to improve – now the pressure’s off!
Kind regards
Barbara
(UK)One more thing, when you say your IST has completely disappeared, am I right to assume that’s Intermittent Sinus Tachycardia ?
Dr Diana’s theory (particularly the Diamox) has brought me much relief, so I’m especially grateful too. Also, more good news is, that once brain structures revert back to their original position, shape and state, more benefits can follow.
I do appreciate the difficulties with guaging the right amount of Diamox though, taking too high a dose caused me to have ‘hand contractions’ in 3 fingers but reducing the dose has just about got rid of these now. Regarding my original symptoms, I can still tell if I forget to take my ‘half a pill’, so I’m not quite ready to wean right off it just yet but I’m getting there.
Barbara
(UK)Barb and Jessica, That was one of my first thoughts, too! I’m learning that invasive procedures (biopsies, LP’s, surgeries, endovascular procedures, etc) tend to cause rebound inflammation and all of its fall-out in many of us and if we can move to non-invasive options, we tend to do better overall. Anyone else notice this? If we can get doctors to consider Diamox as a diagnostic tool, for example, I think that would be great! Some patients are receiving brain shunts without a Diamox trial. Yikes. As you read in the book, this may not be the wisest choice. For many of us, high intracranial pressure returns to normal later. Shunts (and their associated complications) are forever. 🙁 So the take-home lesson for many of us is “less is more” in many cases. 😉
I thoroughly agree, what harm can a Diamox 2 or 3 times a day do, after all, their action is very short lived and it could do a whole lot of good (for a whole lot of people!) You can usually tell the difference within a few days, if not immediately – and how cost effective would that be for the NHS in the UK, it would save millions on wasted procedures and consultant time.
Barbara
(UK)
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