Hello - I am new here. Quix, I found a post you wrote somewhere else and really want to ask you a question about it. I am desperate and in need of some help. You mentioned that you had a spinal headache that lasted 6 weeks. I am suffering from a spinal headache right now, and it has been 5 weeks. I received a blood patch on day 3 of the headache which lasted only 1 day before the headache (and nausea and dizziness) all came rushing back. I have been trying so hard to wait this out without going back for another blood patch, as it sounds like these things are self-limiting and will eventually heal. I've also read about success rates and risks with blood patches and want to avoid it if I can.
My question for you is this: Did your spinal headache go away very slowly? Mine is improving, but it is extremely slow. I am still lying down for the majority of the day, but I can now sit up or stand up and walk around the house for a short time without feeling like I'm going to die, but I still get the headache and nausea and have to lie down again. Last week I tried to ride in a car (lying down), as I was getting better, but I ended up back home with a severe headache and nausea that took a week to recover from. However, each morning, I feel a little better than the day before.
It sounds like all of your symptoms had resolved within 6 weeks. Were you lying down that whole time? At what point did you know it was improving? Were you able to do more and more each day and then just realized it was finally gone? Or did you have to lie down that whole 6 weeks until finally one day you could be up and around?
I would REALLY appreciate it if you wouldn't mind responding to me and letting me know the specifics of your healing process. Like I said, I'm trying hard to wait it out, as the research shows approximately 87-90% of people recover within 6 weeks. (I finally made a deal with my husband that after 6 weeks I would go back for another blood patch if this thing wasn't gone.)
THANK YOU, THANK YOU, THANK YOU for your time and help!!
Hi, I've been chasing you around trying to get the answer to you. You will see my answer on several of the posts on the first page here, but I know how confusing new forums can be so I'll copy it here. I also know you're in pain and you're scared
Hi, there! I'm sorry I didn't answer your question yesterday. I certainly meant to, but just have not felt up to any long answers.
Yes, I had a spinal headache after a surgery in 1983 where the anesthesiologist poekd me more than a dozen times, injected the epidural twice (which never took) and finally just placed the anesthesia in the spinal canal. By the second day I was vomiting if I raised even to 30 degrees. On the fourth day I had a blood patch which worked immediately. But, I could only be upright for about 15 minutes.
Over the next 6 weeks or so, I don't remember exactly, I healed very slowly. Every few days I noticed that I could be up for a little longer. Eventually, the process allowed me to be up and around normally.
But, my healing progressed just like you have described - very, very gradually. I never had a "big" jump in healing. When it healed, it was permanent and the headached never came back.
At this point, you should be lying down when you need to and up when you can, but DO NOT lift anything heavy or strain. Use a stool softener if need be. I also think you should be communicating with your surgeon or anesthesiologist (who did the blood patch). Don't take the 6 weeks as absolute. It may take you 7 or so. But, the gradual healing is exactly what I went through and is what makes sense with this kind of truama.
Again, I'm sorry I didn't get to your answer. You are probably terrified and going stir-crazy to boot!
I don't know your whole story with your LP and blood patch but wanted to share something else...
After my LP, they told me to go back to taking all my medications which included 800 ibuprofen 3 times a day. Which I took after I got home from the LP. 2 days later I got a blood patch and the anesthesiologist pointed out that with ibuprofen, I might not clot well and that may have contributed to the spinal headache. I stayed off the ibuprofen and it took about 2 weeks for the headache to fully resolve. I only had to lay flat for about 8 days (even after the blood patch). So I'm not sure if you are on any blood thinners or ibuprofen, asprin, naproxen - which may inhibit clotting. You may want to check with your doctor about that if you are. Or go over your meds with the anesthesiologist.
I was fortunate that the anesthesia department was great and called me every day to check on me. They were very willing to have me come back for another blood patch and said that they have done 2-3 sometimes in hard cases. I felt comfortable enough to rest at home and wait as I was improving every day.
I really feel for you. Besides the headache, I would become very disoriented standing up. It was very scary.
Thank you both so much for your responses! I REALLY appreciate you taking the time to help me out.
Quix, sorry about the confusion. I’ve never posted anything before and am not quite sure how all of this works. I’ve searched for days on end for any personal story of someone whose symptoms have lasted this long, so I really appreciate your insight. It’s helpful to hear how your symptoms went away gradually. Mine seems to be doing the same, as it is much less severe than it used to be, but I am still concerned that it may go on much longer. I’m wondering if this stage in the game that I’m just so thankful that I’m not in tears and don’t feel like my head is going to explode to the point I want to just die, that I’m willing to wait it out (not risking the complications from another blood patch, including puncturing the dura again and starting all over). However, I still can’t be up very long and haven’t been able to leave my house for almost 6 weeks now.
I have been keeping in contact with an anesthesiologist who has been guiding me through this a bit. She knows I would rather not get the blood patch if I don’t have to, so says I can wait it out if I want to and that it will heal eventually. She also said the longest she’s ever seen anyone with a spinal headache is 5 weeks (which was with 2 blood patches). Now that I’m almost to 6 weeks, I’m getting a little nervous. I’ve heard these things can last for months (even a year in some cases), but I’m trying to hope for the best. I have back surgery scheduled in another month, so I really need to be done with this. I just don’t know when the time is to say enough is enough and just go try another blood patch.
1. Knowing what you know from your own experience, what would you do if you were in my situation?
-very severe headache, nausea, dizziness for first 2-3 weeks, gradually diminishing
-blood patch at day 3, only lasted one day, didn’t hold
-much better now than before (approx. 75% better 6 weeks out)
2. What made you wait yours out? Was it just because the blood patch took away the severe headache at the beginning and your symptoms were much more minor?
3. You said you were able to be up for only 15 min. at a time after your blood patch. At what point were you able to ride in a car and leave your house?
I know your experience was a long time ago and you may not be able to remember specifics… I’m just having a hard time with this; it’s been so draining.
Alastria, thanks for the info re: ibuprofen. I will definitely stay off of it. Do you think Tylenol would be okay to take? At the beginning of this, nothing even came close to touching the pain, even Hydrocodone, but I’m thinking that Tylenol might take the edge of now since the pain isn’t as severe. (Hydrocodone works now, but I really don’t want to be taking that if I don’t have to).
THANK YOU both for all of your help! You have no idea how much it means to hear about your experiences!!!
Just a thanks and a question. Thanks to Mint and Quix and others posting here - this has helped me a lot. I'm on day 12 and don't want the blood patch. It'll be a cold day in hell before a needle gets near my spine again. I appreciate hearing all the research you've done, as it reflects my concerns as well.
I'm lucky it's never been debilitating. In fact it hasn't really even be postural since day 5. It's kind of intermittant headache, does seem to depend on my activity level.
Here's the question: has anyone experienced back pressure - not pain, not at site of puncture, or needle insertion. Entire spinal column, centered in mid-back. Not overwhleming, but strong and constant. Worse when lying down...
Yes, I have the spinal pressure. It's been worse for me in the past where it has affected standing, sitting, using the bathroom, etc. It's much better lately, but always there, and laying and positions still give me problems. Feels like it's pressing out, and it's hard to explain.
Welcome to the MS forum. You've bumped up an old post, but it's a good thing. We always learn something new from our past convos. Tell us a little more aobut what you have going on if you feel comfortable to do so...
I saw this thread was bumped up, so I thought I'd give an update in case it helps anyone else.
Last time I posted I was 6 weeks into my spinal leak. Well, it's 9 months later and I'm still dealing with it, although I definitely see the light at the end of the tunnel now. I had 3 blood patches total, one at day 3, one at week 6, and one at 3 months. The first one worked but only for a day, the 2nd one didn't work at all, and the 3rd one didn't work at all. However, after 6 months of bed rest (only up to use the bathroom or change positions in the house), and 3 months of high-pressure symptoms, I'm much better and almost functional. Bed rest was a nightmare in and of itself, as my body completely deteriorated (muscles, lungs, heart, etc.) and ended up in the ER at one point for a suspected blood clot. (I was very conscious about the possibility of a blood clot from bed rest so I did move and do small leg exercises - nothing strenuous). It turned out not to be a blood clot, but I still want to warn others of the dangers of bed rest. However, that being said, I do contribute much of my healing to the bed rest.
After 6 months of lying flat, one day everything switched, and I went into high-pressure. My head actually hurt more lying down, and was relieved by being upright. Apparently after a surgical intervention, blood patch, or even through the natural healing process, you can go into what's called "high-pressure" or "intracranial HYPERtension". Your body is so used to making more spinal fluid than it needs, as it's trying to make up for the loss of spinal fluid when you are leaking, that even after the hole is sealed, you continue to make too much. Instead of not having enough spinal fluid you have too much, and your head pain changes to being worse when in the recumbant position and relieved by being upright. The theory is that your body should eventually regulate itself and make the right amount of spinal fluid.
So now I sit up all day instead of lie down. Mornings are worse for me, and there have been nights when I've had to sleep sitting up. But as the day goes on, the longer I'm upright, the pain decreases. I still have some pain/pressure (although different and much more mild now), occassional dizziness (only when going to lie down or get up and car rides), and am still very sensitive to noise (I wear ear plugs when in the room with more than one person, when someone is doing dishes, etc.). I'm still not back to work, and still not able to go out in the community (i.e. grocery shopping, restaurants, etc.) However, I am now able to go on walks, leave my house (although I'm still not driving), and talk more with people. I take an over-the-counter diuretic which seems to help.
I have been in contact with Dr. Schievink of Cedars Sinai in LA throughout this process, and gotten much helpful information from Brain Talk Community message boards. I strongly encourage anyone here to visit the site. It absolutely got me through this. You will find a ton of useful information, as people are going through the exact same thing we are. People post daily and share articles, personal experiences, and discussions with their doctors. Here is a direct link to the daily postings...
I really feel for all of you who are going through this. It's such a scary and debilitating illness. But hang in there! There WILL be a light at the end of the tunnel! I'm not quite there yet, but I can see it very clearly now...
Bless you, Mint - both for enduring with courage and for sharing. I'm only on day 14 but I have had the same high-pressure headache after the 4 days of spinal headache. My doc says it's "muscle tension" but I think I know the diff. The headache is worse lying down, and I can trigger it by bending over head to floor.
Far less intensity than yours and duration. And all I can say is I'm thinking of you and thanking heaven for quicker resolution. I'm sending your post to my doc.
I also thank heaven for people like you who take the lemons they are given, and provide lemonade for others. Thanks for the excellent help and resources!
My original thought was that it could be an inflammation from infection, and since I've taken Bactrim for hospital-acquired MRSA two days ago, I've seen 50% reduction in pressure. The thing is, I only had the pressure for about 7 days before that, so it could just be my body reached a certain stage in healing process. Something to consider...
hello doctor, i have had this back pain for the past four to five months and i have been to hospital for treatment but am told there is nothing wrong with me.i know myself that there is something wrong with me and i got this site when i was conducting a search online about what is happening to me and i found out that there are some people who are facing the same problem as am facing here after going through what they have sent to you.
my problem is i swim a lot but i swim with my back and sometimes when swimming, i jump out of the water and hit my back hard in the sea in a form of exercise but recently i experienced this spinal pain and i went to see the doctor.i was also experiencing severe headache and then some pulls in my veins which has never happened to me.one side of my body also pains me when i am out of bed but when i am sleeping, i don,t feel that pain till i am awake.i have tried doctors but they have not been able to get to the bottom of the issue and all they tell me is that i have lost some fluid out of my spine and it is cause of what i am going through now.i want to find out what will happen to me if i don,t get any good treatment for this in known time.i need help so pls find a place to help me.can heat also contribute to what i am going through.thank you so much.it has affected my waist and all my joints that when i walk i feel so much pain that can not be controlled.i feel pains in lower part of my wrist .
Well like you all I have been miserable. I am on Week 9. I had a procedure on my back but did not get the spinal headache until 5 weeks later, the Drs were baffled. Then after I got the headache it took 4 weeks for finally a Neuro surgeon to diagnose me. By then they said it is too late to do the blood patch. But I am still suffering from headaches and neck pain. The Nausea seems to finally stopped but I still get the ringing in the ears and they feel plugged. Its very hard to be in a loud room it makes me want to scream. I only get dizzy when my ears are really bad. I was off work for a month but now back. But when does it end, really does it? Its hard to just try to "ignore" your head in a vice. I have had great days thinking okay here I am finally at the end but then it gets worse for a few days. So frustrating. I feel for everyone and people don't understand when you try to explain it to them, so miserable.
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