Is anyone Still suffering months after lumber puncture?
Posted , 26 users are following.
Hi
I had an lp in August. Since then I have been suffering from migrane type headaches and associated nausea. It's left me unable to work. I was taking codine and amytriptalene. That didn't help. Now on pregabalin. This makes my head spin. So far all tests are clear. So it seems that all this is down to the lp.
Anyone in a similar position or now recovered?
Any comments/advice much appreciated.
A
1 like, 46 replies
savanah11200 ang1to10
Posted
Guest savanah11200
Posted
I have not successfully gotten rid of mine yet. I have confirmed low CSF pressure SIH and mylegram shows cysts/problems with dura in lower part of spine. I've had three blood patches so far. This is complicated by the fact that I also have chronic intractable migraine (which inexplicably grew out of control one day three years ago--we think due to the CSF leak). I have extreme sensitivity to light, sound, food, changes in weather, stress, lack of sleep, and most recently, have trouble using my eyes without extreme pain (headache.) I have gotten progressively worse over the course of three years, one thing developing after the next as I continue to deteriorate.
The first two (blind) blood patches brought my pressure up some, but I saw no improvement in symptoms. The third was a targeted patch after the myleogram. I began to see improvement. For a while, the positional headaches went away. After months where I couldn't read without pain, I could do so with enlarged text for part of the day. (This was so huge for me.) Also, I went from having terrible headaches where I was laid out with ice pretty much every day to mild headaches for only a few hours at a time most days and the stronger ones came less frequently. That third patch made me feel SO MUCH BETTER than I had previously.
It did wear off eventually, which my headache specialist said would happen (had happened with her other patient like me) and she thought I might have to get them periodically, which is where I am currently. Or maybe you just have to get a certain number until one takes. Who knows.
jennifer071376 Guest
Posted
narench jennifer071376
Posted
jennifer071376 narench
Posted
julia42559 Guest
Posted
Wow your situation is very similar to mine! I had two blind blood patches and an x-ray guided procedure last Thursday. I'm still in pain and I'm very frustrated. I had my lumbar puncture in the ER about a month ago and I really wish I could go back in time and refuse the puncture. My life has drastically changed since that trip to the ER. I am not the same person I was and I am so exhausted from trying to cope with this daily head pain. I'm afraid I may have to quit my new job because of this.
carly123 ang1to10
Posted
it gets better eventually!!
jennifer071376 carly123
Posted
lily67235 carly123
Posted
Did/have you been tested for any sort of autoimmune disorder, because I've been having those exact same issues and found out that I have an autoimmune disorder called Sjogrens. It can be pretty dangerous if left untreated for too long, you might want to look into it.
lily67235 ang1to10
Posted
Hiya Folks,
Lemme give you a little info before I explain why I think this might help;
For about a month before my LP, i had debilitating headaches, fevers/chills, dizziness, tinnitus, and whole slew of other problems. After the LP, I could hardly move for a week, too much pain and nausea. My doctor then did a blood lab done for inflammation, and found out that I have an autoimmune disorder called Sjogrens. The reason I mention this is that most of the posts on this thread sound exactly like what I've been through these past two months. If you haven't been tested for inflammation/autoimmune disorders, I would as soon as possible. I hope this helps!
~Lily
julia42559 ang1to10
Posted
I had a lumbar puncture about a month ago and I'm still suffering with terrible head pain. I have had 3 blood patches now and the spinal headache is still here!! The first week following the puncture, I was in the worst pain I have ever experienced in my life. Now, I would say that has been cut in half but the pain is still lingering and it's enough to drive me to the brink of insanity. I recently started a new job and it's been so challenging trying to focus and get through each day with this head pain. I also have sharp pain behind my eyes and inside my ears. I have seen my doctors and no one seems to be able to offer any explanations. They keep reiterating that things will resolve soon, however I have found cases of people suffering from spinal headaches for 2-3 years!!!! I'm praying this does not happen to me and I wouldn't wish this pain on my worst enemy. I'm finding that no one will take me seriously at this point and my symptoms are very real and I'm trying not to lose hope.
kaylin77431 ang1to10
Posted
Hello all. I dont know if someone still reads here but i need to try. I had LP 2 weeks ago and i am suffering from dizziness. I had the headache for 5 days and then it was just the dizziness, weakness, lack of energy and the feeling of imbalance. Had anyone those symptoms? Do you have any improvment? What did the doctors said or do about that? All answers will be appreciated. I am feeling so desperate and i don't think blood patch would help ny conditins. Ive read it only helps with headaches.
h19258 ang1to10
Edited
Old thread, but wanted my case to also be on record.
Have been bedridden for soon three months, ever since the lumbal puncture. A young neurologist did it on me. Afterwards they refused to do more than one blood patch and started offering psych medication instead to relieve the pain. To me that indicates that the world still knows too little about how to handle this issue. I don't understand why it's not required that the anaesthetist do this, when things can and seem to often go wrong and an anaesthetist do this all the time anyway.
I wish I had never done it. I think I'm finally slowly recovering, but I'm still bedridden, so my life has been put on hold completely and family has to take care of me many hours of the day. I'm 26.
I would say to be very cautious about whether to do this if you are young, female and/or skinny, especially if you live in a country where they don't understand this very well. All three are risk factors. Unfortunately I am all three.
If I could ask for a change, I would request a more elaborate warning before I made the decision to do this. I was informed about the 20% risk 5 minutes before the lumbal puncture, as if it was nothing for me to reflect on or reconsider.
RebeccaLJ ang1to10
Posted
Old thread that I came across on a Google search. I would love to hear from anyone as I am desperate and my quality of life poor.
I had a LP in the Emergency department in August 2020. The doctor punctured my spine 3 times because he kept missing. The headache that developed 2 days later was terrible. A week after that I developed tinnitus. My doctor sent me back to emergency for a blood patch but they refused. Eventually the headaches and tinnitus went away a month later.
In December 2020 the exact same post lumbar puncture headache returned after a returning to the gym. The tinnitus came back a few weeks after that. I could not find a doctor to help me, they all kept sending me away and told me to take Ibuprofin. The headaches went away February 2021 but the tinnitus and hyperacusis have remained. The tinnitus is SEVERE and I don't even want to live. I think I was leaking, but not that the headaches have gone perhaps not anymore, but I still have the auditory symptoms of a leak. Please can someone tell me if you experienced similar and the tinnitus went away. If so how do it go? Is it too late for a blood patch.
I am really desperate, and losing my will to live. I was never warned of any of this. The original LP in hindsight wasn't even needed. I should never have agreed to it. It has ruined my life.
h19258 RebeccaLJ
Edited
Hi Rebecca. I wrote here 6 months ago, above your post. I am still bedridden 9 months in after my LP. How are you doing now? I found a website called Inspire where there are lots of people with the same issue. The subforum is called CSF leaks. I recommend reading on there.
Depending on where you live I would try to find someone who knows about this. I know how difficult it can be, and I haven't found anyone in my country so far, but have gotten some recommendations through that website. In the US there are some experts that from my understanding are open to review MRI scans if you send it to them. I am planning to do this myself when I am able to do an MRI again. My next step is to go for a second blood patch. I would recommend it to others as well if they haven't done it already since it is standard procedure. It is not too late for a blood patch. The longer you wait, the less likely it is to help, but it is the most likely thing to help, usually. I have talked to someone who was helped from it 8 months into it, and read of cases longer than that.
My tinnitus has mostly went away, but I didn't have that much to begin with. I mostly had very severe pain in my head which is still there if I am upright for too long (longer than a couple of minutes) or strain myself too much.
Too many doctors know too little about this issue and it's very problematic, imo. The go to approach for the ones who don't know much about it seem to be to encourage prescription drugs, while the ones who are knowledgeable seem to more often go for blood patches, fibrin glue patches or more scans to figure out exactly where the leak is or if there is one.
I understand how difficult it is to live with. I can't take care of myself any longer and my life has ben put on hold completely. But I'm convinced I will get better and I think you will too. It is very rare that people don't get better from an LP, especially with blood patches.
Ps: Some of the important guidelines to follow right after a blood patch to not undo it (!):
-Lie flat for as long as possible with only short breaks to use bathroom
-Avoid straining
-Avoid travel, like driving yourself home after. Try to recline or lie down.
-Avoid lifting for several weeks
-Avoid bending, twisting or stretching
-some recommend that you avoid taking anti-inflammatories for a week.
-Avoid coughing or sneezing
-Avoid caffeine and salt. They can increase CSF pressure, which might worsen any RIH and could ruin the blood patch
Good luck and take care.