Sunday, July 3, 2016

Hearing I'm doing well

Had a follow-up appt with the neurologist - first I had to see his nurse practitioner and tell her all the hoop-la that's happened since January - though I'm not sure I've really even put it all on here - so it took a few minutes and so when the neurologist came strolling through the door and started talking to the NP I was a bit irked - it's MY life, MY health, MY condition and so I COMPLETELY took over.... told him how after he sent me to the neuro opthamologist I only saw the fellow who determined that because I don't have papilledema (swollen optic nerves) that I don't have IIH (Ideopathic Intracranial Hypertension) - and how the ACTUAL neuro opthamologist wasn't even IN the office to speak with about this all - and the neurologist piped up saying 20.-30% of IIH patient's don't have this symptom - which I already knew.... but this stupid person sent a letter to my family Dr indicating that I didn't fit the criteria and not to prescribe me my IIH meds - and so 3 wks later I ended up in the hospital for 11 days with an LP opening pressure of 36 (remember that it should be 5-15) and then suffered with metabolic acidosis because my body can't handle more than 250mg twice daily - frustrating for me!

I told him how while admitted that they started me on Topamax at such an increased dosage that I felt absolutely stupid and so (with the every ready guidance of my family physician) that we decreased it to a dose that we feel comfortable with - only 25mg twice daily.

But that I ended up in an ER with a pretty severe headache and pain across my shoulders and up my spine and when they did the OP it was 20.5.... when I asked him (MY neurologist) if this was elevated given the fact that I was on TWO medications that's supposed to LOWER my CSF, he agreed (nice to hear that he agreed with me and disagreed with the other neurologist that I saw that day who said that number isn't increased) - more with the fact that I'm on the Diamox and to a very small degree the Topamax.

I explained that I was satisfied with being maintained on what we had figured out as of November of last year - Diamox 250mg twice daily and Lyrica 150mg twice daily - and then there's also the topamax which he said I should come off of (because the other neurologist that I saw when my OP was 20.5 sent a letter to MY neurologist stating I shouldn't be on the topamax and diamox simutaneously because it increases the risk of developing calculi - kidney stones) the diamox OR topamax.... so I chose => I choose to stay on Diamox because that works for me, not at increased dosages mind you, but my brain seems to prefer Diamox as compared to topamax.

He asked me if I had a follow up with the neuro opthamologist (wish I didn't to be honest, not exactly THRILLED with how they treated me considering they're supposed to be the foremost EXPERTS on this friggin condition!) - which I do mid July - and he actually asked me to call HIM after having the appt to tell him how that appt went and what they had to tell me - which kinda threw me for a loop... I wasn't sure what exactly he meant by that so I'm sure I looked like an idiot with this stare while my brain was running through exactly what that could mean. So instead of trying to figure it out, I just tried to clarify (because this Dr ALWAYS has a milleau of ppl surrounding him and running after him so I certainly wasn't expecting him to come to the phone or for his receptionist to put me through to him!!!) - so what he wants is for me to give the information to his receptionist and she'll somehow get the information to him. And he'll somehow get a hold of me after that to let me know when I will have follow up with him. So ya, I now have NO idea when I see my neurologist next. This isn't too disconcerting since a lot of my care is generally between me and my family physician anyways.

The neurologist did believe that there was migraine aspect to my IIH and so because I had stopped all tylenol and advil since January and I've only been taking statex (morphine), that he's referring me to a headache specialist in the major city that's about an hour away. This is exactly what I want so I''m happy about this. I was able to ask him about the migraine medication that my family physician ordered for me (Maxalt) and whether this was a good one to use considering I have IIH - he gave his thumbs up - so I'm quite pleased about this. Unfortunately this headache Dr has an UBER long waiting list so I don't expect to see this Dr for a long while. Hopefully we can keep them under wraps. I have found though that rain seems to be a trigger for migraines and putting me out of commission for a couple of days.

So now I have to see my family Dr on monday to relay this information and get him to fill out the necessary paperwork so that I can try to go back to work. Hope the ride is smooth sailing.

Oh in good news - my parents and my brother, sister in law and nephew came for a visit and we went to the amusement park together. SO MUCH FUN!!!! I was soooooo nervous given my IIH and going on the roller coasters or the centrifical force of some of the rides and loops in the coasters that it would spark a migraine. Thankfully this was for naught and I lucked out and enjoyed myself thoroughly. Unfortunately my mom tried to make unilateral decisions for the group and it sparked a minor disagreement between her and I - I was trying to discuss it nicely and she stormed off in a huff and puff. ERGGGG. I hate when my mom is like that to be honest but hey she's my mom and you can't choose blood, so you put up and shut up. Too bad my feet didn't have as much fun - my feet were blistered to high heaven since we walked 11 km in 12 hours!!!!!!!!!!!!!!!  The best part of my visit was watching and hearing my almost 60 year old dad GIGGLE while on a ride. It was awesome. It's something I will treasure. I wish I had caught it on camera but that just ain't possible when you're whipping around in mid air!!! It was fun, we all had fun - completely enjoyed myself.

Now I have to put my nose to the grind stone for school since this course is finished at the end of the month.

And we're also planning for the trip to Pakistan in December-January - 3 wks long.... first time. Hubby's first time back since leaving. My first time there. Boy I can't wait to go there. We're trying to figure out a layover - maybe Brussels or Dubai.... problem is that this layover would be around Christmas time so it would be a bit tricky since things close down in predominantly Catholic countries and I really don't want a layover that I can't anything with! I think Dubai would be interesting though!!! Some investigations and research needs to be had....

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