Three weeks post blood patch pain
I had total 12 blood patches. Two blind that didn’t work and then 10 at once after mylogram. Leak was spontaneous and large. It was in neck. Too much fluid so they could not see exact locations of leak (believe four areas).Head has been good. Energy level starting to increase. I feel sensations from time to time in my head if I move to faster or laugh. Assume that is normal? My biggest concern is I’m having intense pain in back and my neck starting to feel stiff again. It doesn’t feel like muscle soreness..it’s up and down my spine almost a pinching pain, maybe. Is this due to increased activity and normal part of healing or could it be sign I still have small leak or something else? Anyone else experience this during healing process? Thanks!
1 Comments - Posted Sep 10
RHP - 6 months post EBP, medication side effects: Advice please!
I’ll try and keep the my history brief....In October 17 I had viral meningitis, from the diagnostic lumber puncture I developed a post dural puncture headache and many associated spinal leak problems. My symptoms were misdiagnosed for a long time, I was unable to work, becoming increasingly debilitated by my orthostatic headache. After 14 months of different medication/treatments I met a doctor who knew exactly what was wrong with me. I had two high volume blood/fibrin blood patches and after the last one in December 18 was thrown into RHP. In RHP I had the opposite problem, I couldn’t lie down without pain. I had to walk all day to reduce pressure. At worse having to pace at night and always waking up with a massive headache which would take hours to lift. In RHP I developed severe neck, shoulder pain, having to stretch and pull my neck to help relieve the pressure in my head, walking also helped this. Heat pads helped with the neck/shoulder symptoms, I’ve tried dandelion tea, curcumin, I still sleep raised. It helps that I can manage the RHP upright so I managed a return to work in April. My head has always been sensitive to any light, sound etc, and if I didn’t manage to get on top of the pressure symptoms e.g. walk, then I would develop a migraine. I felt this was happening in low pressure also but less noticeable as theres only so flat you can get! After 5 months of being in RHP I felt I’d given conservative management a good go. I was started on Topiramate 4 weeks ago and there’s been definite pros and cons and I’m looking for advice...The Topiramate has made a big difference to the RHP. I’m nearly headache free, now I’m up to my target dose I don’t wake with a headache. I haven’t had a migraine for weeks and the facial pins and needles which I’ve had in low and high pressure have nearly subsided. I still need to pull my neck and walk at times but so far so much better. But there’s a big but! Some of the side effects I can cope with, nauseous all the time, pins and needles, loss of appetite, weight loss. What I didn’t expect to happen was the depression. I’ve been completely floored, my mood is flat, I’m teary, withdrawn. As the dose increased my mood has worsened. I’m normally positive and outgoing but I’ve found myself wanting to retreat. I work in a busy London hospital. It’s not really practical to want to cry all day. Is this something that will improve? Initially I stammered and then this settled, I’m hoping perhaps some of the side effects will settle with time? Has anyone had experience with this? If I manage to persevere do you think my body would of had time to adjust or will the RHP just return? I know all very individual! My consultant also put another spanner in the works by extending all my physical restrictions until the end of the year. One year of not bending, lifting etc. He said there’s still a 10% chance I could blow my patch, is this true?! 🤦🏻♀️Thanks for your advice! Ruth London 🇬🇧
2 Comments - Posted Jun 13
Hello! This is my first post. Three months ago I suddenly got the worst headache of my life and severe neck pain. After a month I was finally diagnosed with a spontaneous CSF leak. A MRI of my brain clearly showed that my brain was sagging. A spinal tap confirmed the low pressure of spinal fluid.A mylogram and multiple MRIs failed to locate the site of the leak. I had a 3rd blood patch a week and a half ago which really helped. The first few days I felt pretty good. However, I think I still may be leaking. When I wake up in the morning I feel good and sometimes I'm headache free. As the day wears on I feel worse. I really pushed myself yesterday and I feel like I'm paying for it today. Caffeine does seem to help, but too much seems to make me so restless.The doctor feels like I may be healed. I do feel much better. He says the headaches may be due to the fact that my brain is irritated and there may be inflammation. Could this be possible?I have learned a lot by reading through the posts and it's encouraging to know that I'm not alone. Before my leak I was an active teacher. I loved to run and workout. I'm on short term disability now. I know I could not be up and active with my 3rd graders.My current neurologist has been very caring and helpful. He's the one who suspected a CSF leak after being misdiagnosed by another neurologist. He is knowledgeable but not an expert on CSF leaks. My case frustrates him, and he's told me he's never had a case like mine. The pain management doctor who performed all 3 blood patches is not so kind and seems to know so little about spontaneous CSF leaks. He made me cry when he asked me why in the world am I getting a 3rd blood patch when the first two didn't work.Is there any advice anyone can give me? I watched a video about CSF leaks with a doctor from Duke who says a CSF leak can be due to bone spurs. When I had a a MRI about 5 years ago because of my neck pain the doctor said I had bone spurs and osteoarthritis in my neck. So maybe the problem is in my neck, but maybe not. In the months before my leak I was really working my upper back really hard with weights. Sometimes the area between my shoulders would hurt.The 3rd blood patch was done in the thoracic region. The doctor went higher on the 3rd patch, but he said he couldn't go too far up. This was the most effective of the 3 patches.Along with much needed advice I have a few questions.Is there a neurologist or pain management doctor in the Dallas Texas area who is extremely knowledgeable about spontaneous CSF leaks?Is there anything I can tell my current neurologist that can help. He is open to ideas, I know he has saught the advice of other doctors.Would any of the specialist on leaks be willing to look at the my mylogram images or other MRI images to see if maybe they see something. I'm not completely opposed to going to California, but I've already spent so much money and this would be a financial strain. Do the experts ever consult with other doctors?This post is much longer than I planned. There are so many times when I feel so utterly hopeless. I pray for healing and am so grateful that I found this site.
10 Comments - Posted Mar 16
Does my problem sound like a spinal CSF leak?
Hello everyone,I apologize if this is really long, but my situation is extremely complex. I will try to give as brief a run down as possible. I have had a severe intractable head pain since October of 2017, it will be four years as of this October. I have seen almost twenty five doctors, including over ten neurologists and no one can figure me out.In addition to the severe pressure and pain over my skull, I have developed full body burning nerve pain that no one can explain. I also have constant neck pain even though I have never had a neck injury show on an MRI. About two years into all of this I developed tinnitus and it is now constant as well. I get nausea, dizziness, vertigo. I have a constant brain fog that makes me feel tired, and the only thing that seems to help with that is caffeine.For the first two years of the pain, it would almost seem to go away completely laying down. Over time as the pressure in my head became more severe, the relief from laying down would lessen from almost fulling going away. To maybe being forty percent better laying down.I got a brain MRI in April of 2018 after it all began, it came up normal other than showing a small 4mm pineal cyst.Before the pain became intractable, I was getting Botox injections since some time in 2016. They seemed to help a bit but it was nothing to write home about. I would get head pain or a migraine as they were calling it a few days a month.Prior to the pain becoming intractable, Imitrex helped a few times but it hasn't helped since it became intractable. The Botox injections became completely useless when the pain became intractable, and I discontinued them at the end of 2018 after one year of intractable head pain and the shots not helping at all.I saw many neurologists after that, and I ended up getting into the University of Michigan. I saw several doctors there, none of which helped me.I ended up finally seeing a big migraine specialist there, he tried many special nerve blocks that they said was a combination of drugs that I could not get outside of UOM at a smaller office.They never worked. He prescribed me many preventative pills to break the cycle too. I tried aimovig, emgality, etc. He did two outpatient rounds of infusion therapy, they were for three days at a time for about eight hours a day. Once in July and the other in September of 2019. They would always ask me what my pain level is, and I would respond every time that it was much better laying down than standing. So, I would have to stand to tell them the pain level.The infusions did nothing for my pain, and again it felt like when I was laying down like the pain was a 4, and standing it would become an 8. I went to several ERs for more infusions but again it all failed. I recall how baffled the doctors were, telling me that usually they are able to find a cocktail to break even the most horrible migraine cycle.The migraine specialist at UOM told me that he didn't know what to do and he recommended that I go to the Jefferson Headache Center for inpatient migraine infusion. In January of 2020, I drove to the Jefferson Headache Center. And in March of that year, I was hospitalized for inpatient migraine treatment where they gave me a special lidocaine infusion therapy with a whole host of other strong drugs for six days. Once again, the pain was better laying down, and worse upon standing.They told me that sixty percent of patients leave without a migraine and the rest still get significant pain relief.I got no pain relief out of it, and I actually even felt a little worse from laying in a hard hospital bed for a whole week.They told me that my only treatment option left was ketamine infusion therapy which involved a drive back to PA.At this point, I didn't have faith in the migraine neurologists anymore, they had tried almost thirty drugs, many infusions, nerve blocks, botox, and they never could lower the pain for me at all.I started to look into other avenues.I ended up going to see a neurosurgeon in South Carolina in August of that year named Dr. Patel. He published research papers on how pineal cysts can cause head pain and in those cases claimed that removal helped the patients. He boasted that ninety percent of his patients were happy with the results of their surgery and he claimed that his procedure was 'minimally invasive' because it was just a dime sized opening.I regret to say that I went through with the minimally invasive craniotomy on December of 2020. I went through the recover, he claimed it could take ninety days to feel relief from my head pain. As I recovered, I found that I never got any head pain relief. All of my symptoms were still there, plus the pain of having to recover from a brain surgery.It is now almost August, I would say I am pretty much recovered from the brain surgery aspect.But earlier in January, I saw a neurologist who told me several times in an appointment that my problem sounds much like a spinal CSF leak. I looked up the symptoms and I was stunned over how that sounded so much like the hell I have been living through.When I saw him again several weeks later, he acted like he never said that he thought it was a leak and refused to investigate it with a myelogram of my spine.Another neurologist, ordered a lumbar puncture for me at the end of April, my opening pressure they called the higher end of normal at 16 but it was still considered normal. I have also had three brain MRIs over the last four years, 2018, 2020, and a third in January of this year. They all showed up normal other than the cyst. There was no signs of low or high pressure on my MRIS. But I did read that in twenty percent of the cases patients with leaks will have normal brain scans. Ever since I had that done my pain has tripled.I couldn't work, do school, or be around sound before the LP. For the last four years I have had to abandon all that I love in order to deal with living with this pain. I cannot watch TV, play video games, go for hikes, bike rides, all of the movement and the sound makes my pain worse.Even my own voice makes my face vibrate and as a result I have to limit how much I speak per day. And again it was always better laying down.But after the LP everything was magnified to an even more insane level. After the puncture, I could no longer even sit up or stand up for even small duration's of time.I have been writing a story for several years to help myself cope with the pain, and after the LP I could no longer write. Because when I try to even partially sit up, I felt like my limbs were jelly and the urge to vomit would force me back down on my back.In addition to the head pain getting worse after the LP, I developed some new symptoms. I started getting a stabbing knife like pain in my ears. As the head pain rises, I feel like someone is shoving a screw driver in my right ear.I also started having problems seeing, and episodes of my vision becoming blurry. I saw a neuro ophthalmologist at UOM at the end of May one month after the LP and he said that my eyes were structurally fine. He claimed that all of my eye pain and problems seeing are from the head pain.It got even worse in June, and then in July I was finally ordered a blood patch. I had my first blood patch on July 12th.It made my pain worse for twenty four hours, but after that, I couldn't believe it. My head pain was cut in half, it was the most head pain relief that I have felt in four years. My nausea went away, I started to feel like I could look at things better, I was able to stand without feeling like I would vomit. I was overjoyed, I still had head pain but it was far more tolerable and the patch had worked better than any drug, infusion or injection that the neurologists have given me.I was still taking it easy, mostly laying flat and I started to write again.And then at like 12:30am at night all of my symptoms came back in full force and I was just as ill as before.I had a second blood patch, on July 22nd. But I had no pain relief from it unlike the first.I have been on a wait list to see someone on the CSF leak team at the Mayo Clinic for over two months now.The radiologists from the local hospital in Michigan don't seem to know what is wrong with me, and they were unable to answer any of my questions. They believe that I have a leak, but they get confused when I ask if my entire problem all this time could be a leak.My local neurologist that ordered the LP and the blood patches ordered a cisternogram. But I am hesitant to get it, because from all that I have read it is inferior for spinal leaks.I am probably going to wait until I get into the Mayo Clinic before doing any further spinal testing.So, all of this prompted me to investigate if my whole problem is a spinal leak somewhere in my back. The fact that the neurologists have given me so many drugs and are baffled that they could not dent my pain.And the only things that helped my pain since it became intractable, laying down, caffeine, and the first blood patch, all relate to leaks has made me that a leak may be more likely than this all being a migraine.At this point, I feel like my only options are go to a true CSF leak specialist clinic to get properly evaluated for a leak, see a doctor that can check for CCI, or try the Ketamine inpatient infusion therapy in PA.Given what I stated about, I feel that going to the Mayo Clinic first is the wisest option.Anyhow, I will close this by listing all of the headache medicines that I have tried. Again, I am sorry if this is super long and thanks in advance to anyone who takes the time to read this. Napraxen 500mg.Motrin 800mg.Nabumetone/Relafen 500mg.Fioricet 50mg (2015 and 2021).Lyrica/Pregabalin.Neurontin/Gabapentin.Requip/Ropinirole.Trleptal/Oxcarbazepine.Pamelor/Nortriptyline.Elavil/Amitriptyline.Depakene/Valproic Acid.Vistiril/Hydroxyzine.Topamax/Topiramate 200 mg.Buspirone/Buspar/Vanspar.Venlefaxine/Effexor.Propranolol/Inderal.Memantine/Namenda.Indomethacin/Tivorbex.Duloxetine/Cymbalta.Candesartan/Atacand.Lisinopril/Prinivil 10mg.Emgality 140mg.Amovic 70mg 2x a month.Maxalt 10mg.Imitrex (100mg Tablet and 0.5mg injections).Migranal/DHE (0.5 mg Nasal spray and injections).Ubrelvy/Ubrogepant 50/100mg.Olanzapine 5mg/10mg.Promethazine/Phenergan 25mg.Prochlorperazine/Compazine 10 mg. Injections:Trigger point injections with lidocaine and dibucaine.Greater occipital nerve blocks with cortisone in face and neck.Botox injections. Infusion:Outpatient DHE infusion at Taubman Center Ambulatory Diagnostic and Treatment Unit in Ann Arbor, MI. (One for three days in July 2019, and a second time for another three days in September 2019).Inpatient Lidocaine and DHE infusion therapy for six days at the Jefferson Headache Center in March, 2020. Other:Cefaly Dual device
15 Comments - Posted Jul 31
Need a little hope
Hello, I’m very relieved to find this community. I am a 33 year old female, no health problems or recent surgeries. This is a long post but I could really use some advice or encouragement. I’m Canadian living in Taiwan and I don’t yet speak Mandarin very well, but thankfully I live close to one of the best hospitals in the country where many doctors speak English and the neurologists have a good reputation. Still, I’m feeling a bit lost.One week ago I felt dizzy for no reason while seated. I went for a walk and ended up going to the ER for feeling lightheaded nearly to the point of fainting plus a strange pressure on top of my head with tingling and a slight burning sensation in the scalp. Also a feeling of unreality, like a brain fog.After CT and chest X-ray and blood tests were normal at the ER, I followed up with a neurologist on Monday who diagnosed me with spontaneous intracranial hypotension within about five minutes. He was tipped off by the fact my headaches improve upon lying down. While getting my history, he asked if I had recently done any kind of activity with my head upside down, and I told him I had rinsed hair dye out of my hair for about 20 minutes while bent over at the waist, the day before I started having symptoms. He said that probably caused a hole in the spine and a leak of fluid.He didn’t send me for any tests. He just had the CT results and my symptoms and history. He was very certain about his diagnosis. The doctor’s English was decent but I feel he could have given me more information. I was rushed out of the office after being told to “go home and lie down in a position that eases the headache, drink lots of water and also drink coffee”. We’ll pursue other treatment if I haven’t recovered in two weeks but he didn’t explain further. I didn’t think at the time to ask more questions, and it’s not possible to call him. I’m going back on the 10th.I assumed he meant bed rest for now so that’s what I’m doing. He didn’t specify how much coffee so I’ve just been having a cup every couple hours and it seems to be helping with the pressure during the day. Anyone have success with this bed rest and coffee treatment? I’m also drinking 4-5 liters of water a day. He also claimed 90% of patients recover on their own within a short time. Does that mean I’ll suddenly feel normal again out of the blue, or is it more gradual? Are there any signs it’s getting better? Do bed rest and coffee actually do anything to help recovery or is it just symptom management? I’m not used to caffeine so I’m concerned it will cause more problems than it solves. I read somewhere it may help produce more CSF fluid though.I’ve read about blood patches and surgery should bed rest and time not work. The doc seemed very confident I would recover spontaneously though and didn’t seem at all concerned about other treatments.He also has me freaked out about a brain hemorrhage being a possible complication of this. I’m glad he told me the symptoms to watch out for but I’m finding myself thinking too much about it. I’d appreciate if anyone can ease my mind on that. That combined with the coffee and the fact the headache and pressure are worse at night, I’m not getting much sleep. I’m sure that’s not helping. Does anyone have any advice or has anyone had a similar experience? I hate that I’m in a foreign country dealing with this and I’m feeling pretty alone. I do have my husband here but there isn’t much he can do.Thanks so much for reading
7 Comments - Posted Aug 30
Severity of symptoms dependent on the size, location or speed of a leak?
Good evening. This is my first post however, I have been reading these threads over the past 4 weeks trying to understand this incredibly difficult condition. Here is a quick rundown of my story - feel free to skip to the last paragraph which contains my question:I'm a 36 year old male and live in Ottawa Canada. In 2017, I had a head injury while playing baseball where another player and I collided full-speed in the outfield. Head to head contact, whiplash and partial loss of consciousness. 1 month later I lost vision in my right eye. I had MRIs and CTs which revealed a partial empty sella. With this finding and the swelling that was found in the optic nerve of my eye, IIH was suspected. I was placed on Diamox and scheduled for a lumber puncture in 3 months to check opening pressure. The lumbar puncture did not go well. The resident doctor took multiple attempts and when fluid finally started coming out it was so slow that it took almost 25 minutes drip by drip. I was told the opening pressure was 12. Immediately after, the doctor told me I could get dressed and go home so I did. We made it about 5 minutes down the road before intense pain in my neck started. Soon after a heavy pressure on the top of my head and nausea. I reclined for the rest of the drive and when I got home I could barely even walk into my house. This was the first of 15 days of pure hell. I was warned that a post puncture headache could happen but was not aware that a blood patch was an option. During this time, I could only lay completely flat with no pillow. If I stood up, it felt like someone stacked 2 bricks on my head, my nose and teeth would go numb, my hearing would go completely muffled and even the sound of water running would send shocks through my body. Eventually I ran out of sick leave and had to return to work even though I was not even close to being fully recovered. It tool at least another 15 days before I could make it through a full day.For the next 3 years I was getting by but had chronic neck pain, headaches, vertigo, weakness, exercise intolerance off and on. In May of 2020 I started getting a constant drip down the back of my throat every day all day with pressure in my sinuses. My family doctor treated me with antibiotics thinking it was a chronic sinus infection. The meds didn't work and the symptoms continued to get worse all the way into December where the weakness, headaches and sinus pressure got much worse. At this time I also started getting a racing heart when I would sit up or stand. I ended up in the ER twice with high blood pressure 195/115. I was given a CT which was all clear and sent home. Over the next few weeks I continued to go downhill to the point where I could no longer be upright. Then one day when I stood up to go to the fridge the old familiar symptoms of face and teeth going numb along with the sensation that my brain was being pushed through my neck. That's when I knew it was the same thing I experienced after the LP 4 years ago. I tried conservative treatment of bedrest, coffee and fluids for two weeks but it got worse to the point where I couldn't sit up so off to the ER again.This brings me to current status and my questions. I had a head and spine MRI but no leak was found. I was given my first blood patch in the lumbar area with 20ml in the hospital. This seemed to help slightly with the facial numbness and a little but of the intensity. of the headache. I followed the post patch procedure by staying flat for 72 hours and was on bedrest after however I could still not be upright for more than 3 minutes without the POTS symptoms and building severe neck pain with pain between my shoulder blades. 11 days later, I returned for a second blood patch in the lumbar area with 32ml.After this patch the doctor tilted the table down for an hour then flat for an hour. The following morning was the first time I didn't feel pain in my neck for over a year. It was short lived though as that evening it returned. I am now 15 days after my 2nd patch and still cannot stand up for more than 5 minutes before needing to lay back down. My heart rate goes from 70 to 110 immediately, my systolic drops 20 and diastolic goes up 20. Today the intense headache and numbness seems to have returned. I've read a lot of people's experiences and many people mention how they get several hours of up time during the day. I am wondering if the fact that I have virtually no up time other than the washroom means that my leak is going to be more severe? A fistula perhaps? Has anyone had low pressure symptoms worsen 15 days after a patch but then still heal after a few more weeks? Or does it pretty much mean that it failed? I don't want to keep doing blind patches and my next step is to try and get better imaging in Toronto but I am really worried for what I am in for. Just trying to get appointments and in contact with doctors who listen after being released from the hospital is tiring. This has already completely flipped my life upside down and feels completely hopeless. I really feel for all of you who have went through this and am grateful to all the people trying to help others.Thank you
12 Comments - Posted Mar 18