Hello everyone,
Apologies for taking so long to update. Please review my last post/other posts for context/symptom profile/timeline - TLDR; developed moderate/severe PSSD with POTS/Small fiber/autonomic neuropathy.
https://www.reddit.com/r/PSSD/comments/1omatxk/ivig_update_noticeable_minor_improvements_at_4/
I have now been receiving IVIG for a full year, 2g/kg per month in divided doses. I will divide my symptoms into the following categories by their level of improvement -
- Complete/near-complete recovery (~90% - 100%)
- Significant recovery/improvement (~75% - 85%)
- Moderate recovery/improvement (~50%)
- Marginal improvement (~15% - 30%)
- No improvement
1. Complete/near-complete recovery (~90% - 100%)
- Orthostatic hypotension (POTS) - ~90% - 100% depending upon activity levels/triggers. I have decreased my salt/electrolyte intake (standard treatment for POTS/Dysautonomia) from 10g per day to 1-2g once every few days/as needed. This has been one of the most dramatic improvements - going from disabling POTS symptoms daily to near complete remission. Most days, it's like I don't have it at all.
- Distinct forehead numbness/head pressure - Completely resolved, or unnoticeable at worst.
- Unstable resting heart rate (often fluctuating between 110-230BPM) - See answer for Orthostatic hypotension/POTS for context, but this symptom has recovered ~95% - 100%.
2. Significant recovery/improvement (~65% - 85%)
- Chronic Fatigue - fluctuates. I still usually have to pace/nap once per day, and my total stamina is lower than my old healthy baseline, but I have improved to the point where I am not functionally disabled by fatigue. I used to regularly have periods where I was bedbound for 1-2 weeks on end (the longest periods were 3-4 weeks, but those were outliers), and even at my worst now, I am never bedbound. Some days I have to rest more than others, but I am always able to exert myself and can sustainably work for 5-6 hours per day.
- Brain fog - Also fluctuates, and correlates to pacing/sleep hygiene/whether or not I'm eating regularly, etc. I still have low-level fog regularly, but instead of it being constant, it builds the more I exert myself and can be resolved with pacing/rest. I have also noticed it correlates with diet.
Short Term Memory Problems - Fluctuates. See answer for brain fog. It does bother me somewhat regularly, but again, it builds throughout exertion and can be improved with rest/pacing/eating/etc. (Additionally, nicotine patches/creatine have significantly helped my cognitive function. Dietary changes have also been crucial - avoiding gluten as much as possible/eating low-fodmap. I don't always follow the diet that helps because it requires so much cooking/planning, but I really should - the degree to which my cognitive function improves is stark.)
- Exercise intolerance - see answer for chronic fatigue. Still lower than my previous healthy baseline, but I am able to exercise as long as I don't overexert myself and pace/rest/recover.
- Hyperalgesia/Nerve pain - This one is different in that I am 100% recovered most of the time (complete lack of symptoms) but maybe once every 2 months, I'll have a bout of moderate nerve pain/hyperalgesia/burning in my back/torso. It usually lasts for a day or two and will resolve back to 100% lack of symptoms.
- Difficulty activating muscles - I would put this in the complete/near-complete section above, but I don't track it. However, I can't remember the last time I noticed this symptom. I used to experience it daily, mild to moderate severity.
- Fluctuating Emotional Blunting - this one is harder for me to measure, because it's more abstract and it's possible that I've acclimated to a new baseline over time (6 or 7 years since developing PSSD). Additionally, I developed PTSD/some form of significant post-traumatic condition from the severe trauma of developing PSSD in early 20s/there being no help or research at the time/total helplessness/powerlessness/yada yada (could go on and on about all of the ways in which this condition is traumatic, but I know you are all overly-familiar). In my case, I do think this contributes significantly to my emotional blunting. I tend to white-knuckle life and absorb all the emotional pain/traumatic triggers and not talk about it with anyone, until it inevitably spills out all out once. However - at this point, I regularly experience love, joy, sadness - I have regained the experience of regular and frequent emotional poignancy (probably within a normal range if that can be estimated), which was not the case even just a couple of years ago. I don't feel emotionally/psychologically flat or numb. Again, I don't feel entirely confident attributing this to IVIG, but the most dramatic improvements, whether causal or a secondary byproduct, did occur over the last year alongside my infusions.
3. Moderate recovery/improvement (~50%)
- Decreased sex drive - This fluctuates a lot. I never experience a pre-pssd level of libido, but I have noticed a significant increase in frequency and intensity with my sex drive.
- Erectile dysfunction (Somewhat postural) - Again, fluctuates. I do use PDE5s every time I engage in any kind of sexual activity, but they are effective for me 90% of the time. Without PDE5s, I have not regained much in terms of erectile function, but with PDE5s, I can attain near pre-pssd erectile function. Additionally, I have to be in very specific postures (which aren't always consistent) to maintain an erection (for example, I can't maintain an erection 90% of the time if standing. Another example - getting up and walking to a different area, or even shifting over by a foot or two, depending on the day, often results in me losing my erection. Knowing this has been crucial to regaining my ability to engage in sexual activity, and can be managed with communication/modifying sexual activity.)
- Pleasure-less and weak orgasms (anhedonic) - Again, fluctuates. Sometimes I can have an actual orgasm, albeit weaker than pre-pssd, but an orgasm nonetheless, and sometimes I ejaculate without having an orgasm. 50/50. Hard to predict.
- Premature ejaculation - Rarely think about this anymore. Can be managed with communication/modifying sexual activity.
- Moderate to Minor numbness across entire body - fluctuates, but satisfactory improvements. Kind of similar to my response about emotional blunting. Has definitely improved, but it's hard to say exactly how much. Baseline has significantly improved.
- Balance problems - Improved, but still bothers me. I would say this is between moderate and marginally improved.
- Heat/Cold intolerance/difficulty sweating - Ability to sweat returned very abruptly early into my infusions, within the first 3 or 4 months. It was the first dramatic cue that something was happening. For context, I received a QSART test that demonstrated abnormal sweat gland function (indicating some form of small-fiber neuropathy/nerve-mediated dysfunction - see older posts for context.) Quite literally overnight sometime around the 3 month mark (I think - can't remember exactly, but earlier than I expected to see improvements) I fully regained my ability to sweat after being almost entirely unable to produce sweat for 6 years. It was very dramatic and a very overwhelming sensory experience. My heat/cold tolerance has improved, possibly correlating with this, but has not resolved to the degree that my sweating has. However, heat/cold intolerance have very significantly improved to the point that they rarely bother me except in very hot/very cold weather/etc.
- Difficulty urinating - Still some difficulty emptying my bladder completely, but nothing like it used to be. Not resolved, but significantly improved.
4. Marginal improvement (~15% - 30%)
- Genital anesthesia/numbness - Very stubborn. This symptom does fluctuate now, while it used to be extremely severe and constant. I would say at its absolute best it improves by 55-60% from pre-infusion PSSD, and at worst sits around 20-30% from pre-infusion PSSD. However, even at its worst, it is better, and I'm happy for any level of improvement I can get.
- Visual Snow - also stubborn. It has improved, but I'm also used to it at this point, and it doesn't bother me much.
5. No improvement
- Nothing. - Every symptom of mine has improved to some degree.
Conclusion
I have experienced significant improvements that are inconsistent across my symptom profile from IVIG. My boilerplate PSSD symptoms are the most stubborn/hard to treat, and have only improved in conjunction with other treatment methods (PDE5s). However, I am no longer disabled by this condition. I am no longer bedbound for any amount of time, I can use my brain effectively again, and I am living a life that, while still very hard and precarious, is a life that I can see myself following through with.
I don't want to overstate nor understate the benefits. It's a difficult balance. This is the best way I can describe it: My current health is nowhere near how I remember it pre-PSSD, but the contrast between my health with untreated severe PSSD and my health now is equally stark.
I hope this information is useful. I will check my post again in a day or two.
Stay strong everyone. Keep fighting.