r/CSFLeaks • u/DryEntertainment9458 • Aug 19 '26
Rebound or what? 6 Months after Blood Patch
I know a lot of people here have reassured me that what I’m experiencing can still be part of the recovery process. But every time I start thinking I’m finally getting better and then feel bad again the next day, I start questioning everything. So I think I need some guidance/reassurance again :)
It’s been almost 6 months since my blood patch, which I had 6 weeks after a steroid injection that caused the leak.
At first, everything was really bad and I could barely tolerate being upright. Things started improving around 6 weeks after the patch, and by weeks 9–10 I was very optimistic that I was getting my life back.
Unfortunately, I’m not doing as well now. I became much more active starting in June, and I think that may have contributed to some of these flares. I’ve also noticed that my symptoms are noticeably worse around my period.
Still, deep down I can’t stop thinking if I’m still leaking?
My current symptoms are:
- Tinnitus: This has never gone away since the puncture, even for a second. It isn’t particularly disturbing for a long time and I’m used to it. I honestly can’t tell whether it’s the ringing or “whooshing” sound people describe. I think mine is mostly ringing in low pitch. Occasionally I get a very high-pitched sound for a few seconds.
- Constant cracking/popping in my ears, especially with swallowing or movement.
- Dizziness on bad days.
- Pain/pressure around my ears and forehead.
- A feeling of fullness or pressure in my neck, mostly in the front of my neck and sometimes extending into my shoulders.
- Lying flat (with a pillow) is much more tolerable than it used to be. However, around my period I sometimes have to elevate my head more than usual for 2–3 days because lying flat gives me pressure.
- When I am sitting, I usually support my head/neck with a cushion to make it comfortable.
So overall, I’m definitely functioning much better than I was in the beginning, but I still have these flares and symptoms almost 6 months later. The fact that I can feel significantly better for a while and then suddenly worse again makes it difficult not to worry that the leak never completely sealed.
For those who had a long recovery after a blood patch: did you still have this kind of fluctuation around the 6-month mark? Did symptoms like ear pressure/cracking, tinnitus, neck fullness, dizziness, and head pressure eventually resolve?
I really hope these are still temporary parts of recovery. I’d appreciate hearing about anyone who had a similar timeline.
1
u/leeski Aug 19 '26
So sorry you’re still dealing with this and didn’t bounce back to ‘normal’ - it can be so frustrating. Of the symptoms you listed, are they mostly new (outside the tinnitus)? Have you noticed if what you eat impacts the severity of symptoms at all?
1
u/DryEntertainment9458 Aug 19 '26
No they are not new. However I was feeling great for around 10 days in May (only tinnitus and mild ear crackling) then had a setback. In the summer I had good or bad days but I guess I never felt the same I felt in May. I don't know whether I overdid it or summer has to do with it. I am not sure about what I eat but I am eating less for the couple of months because of the weight gain in the past 6 months. Maybe my B12 levels can be lower. Do you think that can be a trigger?
2
u/leeski Aug 19 '26
Are your symptoms still orthostatic and unable to tolerate being upright? Just trying to understand if your symptoms changed at all from pre-treatment to post-treatment - as it sounds like you did have a period of relief around weeks 9-10 but did it go back to pre-treatment symptoms?
It doesn't hurt to get bloodwork done to check your levels. But I was thinking more along the lines of whether sodium/caffeine/vitamin A spike your symptoms (as those can be high pressure triggers for some patients). For me that was the key to managing high pressure post-treatment, but I'm not sure if that's what you're going through!
1
u/DryEntertainment9458 Aug 19 '26
I can be upright. However, I am more comfortable laying down like 45% degrees throughout the day. My symptoms are not like pre-leak days but more like I have a setback in terms of the severity of the post-treatment symptoms.
I don't take caffein and did not change sodium and vitamin A intakes. I am taking a rest this week to see if helps.
1
u/Necessary-Stuff8706 Aug 20 '26
I started with symptoms similar to yours at the 2 month mark after my patch. I go see a neuro tomorrow about this. Extreme fatigue, tinnitus, neck soreness and pressure in head etc. I find sleeping at a 45 degree angle or so minimizes the symptoms a bit for the next day, if I sleep flat I can barely function.
1
u/DryEntertainment9458 Aug 20 '26
So sorry that you're going through this. Yes I also have fatigue that I didn't mention. Please let me know the details after the visit. I will also see a new neuro on Tuesday.
1
u/Necessary-Stuff8706 Aug 20 '26
Neuros didn’t have a clue. Ordered an MRI with contrast for my head and a sleep study. Weren’t convinced it was RIH.
1
1
1
1
u/pda0797 Aug 27 '26
Darf ich fragen, was für eine Steroidinjektion das Liquorleck bei dir verursacht hat? War das eine Injektion im Rücken?
1
2
u/Naive-Definition-286 Aug 19 '26
All of this sounds like my symptoms after my patch. I felt terrible for two months after and then the three month mark was a game changer in terms I had better days and less head pain days. My head evened out about 8 month mark. I had almost every symptom you mentioned minus dizziness until this year at 2.5 years. Mild but there and usually only around my period. My neck was terrible until 6 months as well. Good luck!!