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 Recap

I experience no headache whatsoever during the infusion. The headaches usually do not begin sooner than the day after my infusion, typically in the evening. Once it arrives, the headache lasts 4-6 days which really add up since my infusions are every other week.

Here is a quick recap of what was tried for the headaches:

  • Hydration: Most patients hydrate extremely well prior to and during their IVIG infusions because it decreases side effects. We tried adding even more hydration than the liter of saline being infused on infusion day a what I drink orally. Although I did seem to feel a little better after infusions with 2 liters of saline rather than 1 liter, the awful headaches still kept me in bed for days. I attribute feeling better with 2 liters of saline than with 1 liter to the fact that I pretty much always feel slightly better after I get IV saline due to POTS.
  • Infusion Speed: We infuse at a rate of 50mL/hour which is very slow. Going slow makes the headaches slightly less severe and (we believe) has prevented another episode of aseptic meningitis, but it comes nowhere near to preventing the headaches.
  • Steroids: Steroids were the only headache treatment we identified of any help. Many patients have success with a 1-2 day high dose steroid burst, however I did not. I required a 7 day tapered course of steroids to benefit, which meant taking them with each infusion would mean being on steroids for a week every other week. This wouldn’t be good for anyone’s adrenal glands, let alone my adrenal glands who – based on my AM cortisol levels – aren’t overachievers. Therefore, I save steroids for when I am in extreme pain or when I cannot mentally handle another day of headache. I have only used them after 3 of my 13 infusions.
  • Benadryl: We also tried Benadryl the day of and days following infusion. I remembered significantly less about my days, but the headache was still very much there.
  • Caffeine: I can tolerate caffeine, but it did not help.
  • Botox: I feel it is worth noting for other patients that I receive Botox injections for chronic migraine, and I still get the IVIG headaches as bad as ever.

The Gameplan

The gameplan was I would take one dose of Diamox in the morning on IVIG day, then I would take a second dose 6 hours later. This twice a day dosing was to be repeated each day for 5 days following infusion.

What is Diamox?

Diamox is a diuretic, which means it decreases how much fluid your body retains by making you pee it out. In the process of decreasing cerebral spinal fluid (CSF) pressure, it also decreases how much fluid the body retains overall. Part of how it does this is by decreasing the amount of sodium absorbed by the kidneys. If you are a fellow sodium/fluid loading POTS patient, you can probably relate to how the thought of purposefully decreasing the amount of sodium/fluid my body held onto giving me pause.

Did it work?

I was disappointed when after IVIG #13, like clockwork, I developed a mild to moderate headache throughout the evening on the day after IVIG. This is what always happens; it is the start of the slide into several days of a severe headache. It means the following morning, I will wake up unable to move my head without flinching. As I was tucking my husband into bed I said, “It doesn’t feel like this medicine is going to work. My headache is starting how it usually does.”

You can imagine my shock when I woke up the next day with the normal post-IVIG fatigue, but no headache whatsoever. WHAT!???? I have vivid dreams, so after double checking I wasn’t dreaming, I carefully sat up. I felt certain that any moment, the headache would hit. It didn’t.

I am editing this post about Diamox and IVIG #13 as I receive IVIG #14, and I am here to tell you the worst headache day during my last infusion cycle was a mild headache the day after infusion. Aside from the evening after IVIG when I had a headache, the closest I got to the IVIG headaches I am used to was experiencing the sensation of the headache coming. This happened as it came close to time for my second Diamox dose, and it went away after taking it. I was nervous the headache would hit my first day not taking it (6 days after infusion), but it didn’t.

Diamox Side Effects – My Experience

This first paragraph may have TMI – feel free to skip. It probably goes without saying I peed a lot while taking Diamox. I am used to peeing a lot due to how much water I drink, but the volume with this new medication was downright impressive. I had mild diarrhea which, on top of the diuretic, may have contributed to feeling dry and mildly dehydrated overall. My eyes were too dry for my contacts some days. (Side note – my eyes have been much less dry recently – IVIG helping Sjogren’s perhaps?)

I am unsure if the fatigue I felt in the days I took Diamox was truly from Diamox or if it was from IVIG. Despite being fatigued, there was a notable difference in cognitive side effects compared to previous experiences. Instead of it feeling as though there was a wall between my consciousness and certain parts of my brain, I could think fairly clearly. This confirmed what I previously suspected – the brain fog after infusions was attributable to the headache, not the IVIG.

Unsurprisingly, my orthostatic intolerance (due to POTS) didn’t respond well to the decrease in blood volume Diamox caused. The last day of taking Diamox, which was 5 days after infusion day, was the first day I felt completely “over” my previous infusion.

The first two days off of it (days 6 & 7 after infusion day) were rough for me in terms of POTS symptoms. I focused on sodium/fluid loading as much as was possible to try and get my blood volume back up. Despite my efforts and medication, my heartrate was effortlessly reaching above 150 every single time I stood. My orthostatic intolerance may have been that bad all along and I didn’t notice since I was resting a lot, or it may have been acting up due to a cumulative effect of so many consecutive days with less blood volume than my body is accustomed to.

When taken regularly, Diamox can cause electrolyte balances. Hopefully due to the low dose I am on and it not being on it nonstop (6 days on/8 days off), I avoid these issues. I'm keeping up with my fluids/electrolytes, and they will be checked next week.

Why was Diamox helpful here?

As I have connected with other patients throughout getting this treatment, I only found a few whose headaches follow the same pattern as mine – worse when lying flat, 1-2 day delay before hitting hard, unresponsive to steroids bursts, and lasting 4 days minimum, but usually longer. Perhaps my previous assumption that the milder headache is the start of the severe headache is wrong. Maybe they are two entirely different headaches. Maybe the milder headache I experience the day after infusions is the IVIG headache many patients experience with each infusion, and the more severe, several day headache is from increased cerebral spinal fluid (CSF) pressure. This presentation would explain why most other patients couldn’t relate to what I experienced. (Or if you could, you guys were very quiet. 😊 )

Will you continue taking Diamox?

Despite the exasperation in POTS symptoms, I do plan to continue taking Diamox. I anticipated it aggravating my POTS, and although I hoped I would be proven wrong, this side effect is not currently a deal breaker. The headaches interfere with my quality of life much more significantly than the orthostatic tachycardia, so I plan to use Diamox to coast through my last 5-6 months of IVIG.

Looking Forward – Subcutaneous Route

I hope to try subcutaneous immune globulin (SCIG) when my 12 month IVIG trial is over in January. SCIG is the same medication I get via an IV only it is administered via an injection into fat tissue. A majority of patients have fewer side effects with SCIG than with IVIG.

We cannot submit an order for SCIG to my insurance for prior authorization without the new submission voiding my current 12 month IVIG authorization. This means if they were to say no to covering SCIG, we would need to get an entirely new authorization to continue IVIG treatment as planned. If we found ourselves in that position, it would not matter it was previously decided IVIG is medically necessary in my case. The insurance company can (and let’s be honest, probably will) refuse to cover it, dragging me through the appeals process again. Since it took 2 years to secure my current IVIG authorization, I have decided to wait until my current authorization expires in January 2018 to have my doctor submit an order for SCIG.

Fingers crossed Diamox works as well for the infusion I am receiving as I type as it did for IVIG #13.

If anyone has tricks for taking Diamox with POTS and not feeling dehydrated, I am all ears!

7 thoughts on “Diamox for IVIG Headaches – IVIG #13

Add yours

  1. I’m so proud that you keep fighting to get well, and researching and trying new things. I love you very much. I’m also happy and hopeful that this new med seems to help and you won’t have to spend 1/2 of your time in pain.

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  2. I’ve been trying the hydration, but still getting the headaches. I’m thankful that they’re not as bad. I’m glad to hear about this medication. Will keep it as on option for future reference.
    Have you tried getting a case manager through your insurance? I have one, and authorizations have become so much smoother. They can even try to get auth for SCig while you have your current auth for IVIG. Case managers have the power. One of the best things I ever did was get a case manager to handle everything.
    Good luck to you!

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  3. So happy to hear that you have found some relief in this medication. I ALWAYS have you in my thoughts Jackie. Keep fighting, you are such an inspiration to do many, please know that. The information you provide is tremendously helpful. Thank you for keeping us updated! Hugs

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  4. That sounds like good news Jackie. So glad to hear that you found something that helps with the awful headaches. Love you 😘

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  5. No tricks or tips but something was made clear to me. When all this started my Neurologist thought I had pseudo tumor cerbri and had me on diamox. I felt HORRIBLE. I could barely stand, I could barely see and sitting up was terror. I have NCS and with the info I have now that medication was killing me. I didnt know if was the meds or conditon. Now I can say that it was both

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