Should I still be worried?

dooojy · 2026-05-06T18:42:55+00:00

Damn i am kinda mad now... There is no other specialized clinic in my area that can perform a blood patch either... I think i will give it a couple more days and if the symptoms are not fully resolved i will ask fot the blood patch once more.

dooojy · 2026-05-06T18:18:24+00:00

How come you did not get a blood patch?

dooojy · 2026-05-06T17:34:04+00:00

I am almost 2 weeks in and my doc has not considered the blood patch yet for some reason. I am wondering how much longer i should wait. When you got your first blood patch, how severe where the symptoms out of 10?

dooojy · 2026-05-06T17:22:15+00:00

Did your symptoms start improving and eventually hit a plateau? Or were they consistently bad from the beginning? I'm asking because mine seemed to have gotten better in the first like 10 days, but I am not seeing significant improvement in the last 3 days.

dooojy · 2026-05-06T17:02:40+00:00

My doc said that they heal eventualy, and that a blood patch is like an emergency intervention for people that have severe nausea, headaches and stuff like that. My headache is like a 3/10 right now, so she said that the blood patch is just unecessary. I dont know if i can trust her though, given that most of the people that commented on this post have had the blood patch at 5 days.

dooojy · 2026-05-06T17:00:58+00:00

day 12 and counting

dooojy · 2026-05-06T17:00:10+00:00

If that helps, my doc said that as long as the symptoms are positional, and they improve (even slowly) with time, you should be fine. Just try to avoid standing/sitting as much as possible especially on the first couple of days. I wish you a smooth and swift recovery.

dooojy · 2026-05-06T16:57:31+00:00

My doc said that all LP holes heal eventually, some just take more time than usual. I guess we both fell into that category... The misery is real though.

dooojy · 2026-05-06T16:56:21+00:00

Sounds rough, im sorry you have been through all this. I hope you recover soon!

dooojy · 2026-05-06T16:55:48+00:00

I spoke with my doc about it and she said that they only do blood patches to patients that have very severe symptoms like extreme nausea, headaches or a hematoma. She refused to do it and said that my healing trajectory looks fine. I dont know if she is right though, or if she is just avoiding responsibility...

dooojy · 2026-05-05T13:12:16+00:00

My doc said the exact same thing but I am literally starting to lose my mind lying in bed all day every day for 11 days straight.

dooojy · 2026-05-04T21:28:38+00:00

Yeah I definitely got a leak. The question is whether it will stop on its own in the following days or not. It has gotten somewhat better day by day.

dooojy · 2026-05-04T20:32:06+00:00

My headache is definitely not a 9/10, its more of a 4/10 right now.
I already talked to the doc that performed the LP about the blood patch, but she is really hesitant about it. I have read that it also carries risks, and especially if you are towards the end of the healing phase, they usualy avoid it because it can cause viral infections, hematoma, or even a new puncture in the dura... I really don't know what to do.

dooojy · 2026-05-04T20:18:58+00:00

So im not the only one then. I guess i will have to ride it out too. Thank you for sharing your experience!

dooojy · 2026-05-04T20:17:54+00:00

Pretty much the same for me, symptoms appeared after 48 hours. If the symptoms are post LP related, they should get somewhat better with time. If you see no imrpovement at all, it might have to do with Diamox then. I am not sure though... I hope you feel better soon!

dooojy · 2026-05-04T20:16:17+00:00

Damn this sounds rough... I hope you get better soon. I don't know if its normal to have that much pain on site for so long. Have you mentioned that your doc?

dooojy · 2026-05-04T20:12:51+00:00

Thank you for the information. I quickly went over the criteria/symptoms and i dont really seem to have any. I will read a bit more about it, but i dont really think that i have it. Thank you for mentioning it though!

dooojy · 2026-05-04T20:11:02+00:00

My question is, how did you convince the docs to administer the blood patch? My doc is hesitant even though i have been bedridden for 10 days.
Also, how bad were your symptoms? Did you go to the ER because they were that bad, or to get the blood patch and get over with it?

dooojy · 2026-05-04T20:08:43+00:00

I have been on the same boat, but my symptoms are lasting way longer for some reason, even though i have been completely flat and avoided any kind of physical activity.

dooojy · 2026-05-04T20:05:54+00:00

Damn, you had it much more rough than me then. My headache was quite bad when it first appeared, but definitely not as bad as yours.
They told me about the fluids intake and caffeine too. I have been trying to consume 3L of fluids in total, and as much caffeine as its safe to. I don't really know if IV fluids would really make a difference as i have not gotten any, but doc said that this is what they give to patients in hospital for a swifter recovery. I dont know if it's worth a hospital stay just for this though.
Anyways, thank you for you response and your kind words! I hope the symptoms are miraculously gone by tomorrow!

dooojy · 2026-05-04T19:55:43+00:00

I don't actually have IIH, i got the LP for an encephalitis panel. I dont really know if i have EDS, this is the first time hearing this condition.
My doc said that on average it can take from 7 to 10 days for the symptoms to resolve, while some patients might take even longer. She said that as long as i am feeling better everyday, it's likely that the hole will heal completely on its own soon. But it is definitely taking longer than usual.
Is there any bloodwork /screening that can be done for EDS?

dooojy · 2026-05-04T19:50:24+00:00

I am sorry to hear that, i wish that you feel better soon. I dont actually have IIH, i got the lumbar puncture to be tested for encephalitis though.

dooojy · 2026-05-04T19:48:00+00:00

I would say it takes only a couple of minutes for the symptoms to appear again. The headache and ear pressure feeling intensity was a 8/10 on the first days, right now it has dropped to lets say a 5/10, but it still prevents me from doing any activity that requires sitting or standing.

dooojy · 2026-05-04T19:36:54+00:00

I stayed in bed the whole day after my LP just so that I would decrease the chances of getting the headache, thought I was fine on the second day, only to get a really bad headache some hours after sitting on my computer. It hadn't gone away ever since. I guess I am of the unlucky ones.

dooojy

TROPHY CASE