Diamox for IVIG Headaches – IVIG #13

Since the more common remedies for IVIG headaches did not work for me, a friend suggested I ask about trying a diuretic called Diamox. My doctor was down with the idea, so I tried it out with IVIG infusion #13. My IVIG Headache History RecapI experience no headache whatsoever during the infusion. The headaches usually do... Continue Reading →

IVIG #11 & #12 Update Pages

  Since we now know what to expect with IVIG infusions, I have decided to switch from doing real time infusion updates to doing updates after I recover from my infusions. I continue to get 30 grams of IVIG (which works out to about 1.2 g/kg) every 2 weeks at a rate of 50 mL/hour... Continue Reading →

IVIG #10 Update Page

IVIG #10 was actually a week ago. Hopefully after you hear about how busy I have been, you will forgive me for not posting the IVIG #10 update page on time. For starters, we are in the middle of buying a house which is exciting but also requires a good amount of energy. Secondly, my... Continue Reading →

IVIG #9 Update Page 

So, I cheated a little bit and didn't post this update page on the day of my infusion, which was 3 days ago. I forgot to set it up the day before the infusion, and the Benadryl makes me fairly unmotivated on actual infusion days. The good news is the lack of motivation lead to... Continue Reading →

IVIG #8 Update Page

If you read my last post, you'll see my infusion pump was set wrong and infused the IVIG twice as fast as my body is used to, which resulted in significant side effects. After 3 days of pain, I took steroids and felt quite a bit better. I took the steroids for 5 days. When... Continue Reading →

IVIG #7 Update Page

I am receiving my seventh IVIG treatment today. I am feeling pretty exhausted, not so much from the treatment (I don't think) and more so from having been busier lately. We are house hunting which is exciting. POTS life tip - scheduling to walk through 4 houses in one day is a POTS disaster. :)... Continue Reading →

IVIG #6 Update Page

My sixth infusion starts in about twenty minutes. Hopefully the Benadryl doesn't knock me out and I can write an overall update here. 🙂 Psych! The infusion company was supposed to overnight the saline they forgot to send along with my IVIG. The nurse arrived and it still wasn't here, so I called for tracking... Continue Reading →

IVIG #4 Update Page

    Hello everyone! Here is a quick recap: Today marks 6 weeks since I began receiving 30 grams of IVIG every other week to treat autonomic neuropathy secondary to Sjogren's Syndrome. It is my fourth infusion. I have struggled with headaches, but otherwise have tolerated treatment quite well. With this last infusion, fatigue was... Continue Reading →

IVIG #3 Update Page

  My infusion started around 2PM and it is 5PM. I've had severe headaches with my first two infusions, the headache with the last one being beyond what I could tolerate. We will keep tweaking things each infusion until we figure out which changes result in less severe of a headache. Changes this time: I... Continue Reading →

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