lumbar punctures

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Trying to find hope

I got a lumbar puncture yesterday and it was absolutely horrible. I knew there was a chance it would show up clear, and it did, but I’m so upset. I felt like it was so scary and painful to do, just to feel like we’ve gotten no further. I’ve had a EEG and an MRI. Both clear. I’ve been sitting here just waiting to them to figure out what’s going on and I’m starting to doubt I’m sick. Maybe I’m just crazy. Or incredibly lazy (unintentional rhyme)! I don’t know how to believe myself and I’m losing faith in my mom that she has the right diagnosis.

#ChronicDepression #losinghope #MedicalMystery #LumbarPunctures #MRI #EEG

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Another day, another trip to the hospital, another procedure…the fun never ends. Being what I call a “professional patient” helps but it’s still scary

I had a Lumbar Puncture Monday and it got messed up and I’ve been having debilitating pain since ☹️I get migraines and this procedure led to some of the worst headache pain I’ve ever had and it continued all day for 4 days…And I had light, sound and motion sensitivity so I just sat in the dark with no sound or movement around me (sadly this is something I’m very used to with my having migraines regularly as a residual side effect from Covid Long Haul) but that wasn’t even the worst of it … after the migraine kicked in I started having intense pain in my upper back, shoulders, neck and upper arms. Out of nowhere, something I’d never felt before? I barely slept that night!

Then Tuesday that pain became so excruciating that with the slightest movement I was screaming out of nowhere…to no one! Getting up was torture. My pain level was 10 out of 10. It was scary.

Fast forward from then and I continued to be in awful pain the next two days. So finally the Docs mentioned I could get relief with a procedure called a Blood Patch…so today I got a ride down to Hopkins that really hurt, every bump or turn, but I got the procedure done. It was a much bigger deal than I anticipated with 6 people in the room…numbing, monitoring, poking, teaching, inserting… It felt more like surgery than a procedure! And it ended up not being a blood patch, but instead of my blood they inserted saline (20 cc actually - like 4 average blood draw tubes size!!!) right in the same place the needle went in for the lumbar puncture but a smaller needle and injecting in, instead of drawing out.

So yes, just another health challenge, another procedure. Been there done that. Sadly prep time, needles, bright lights, poking and being surrounded in an Operating room are no big deal.for me these days. For now I lay flat in bed recovering, just like the last four days, because the only thing that relieved some of the pain all week is laying down! Now I have considerable other pain and was prescribed OxyCodone …but there is an insurance issue and I gave up after being on hold for over 30 minutes…and I can’t drive to the pharmacy to get it anyway . Oh well. This too shall pass …hopefully it’s worth it in the big picture!

#MentalHealth #Depression #Anxiety #Pain #PTSD #HIVAIDS #BipolarDisorder #BipolarDepression #Addiction #AddictionRecovery #Surgery #Grief #COVID19 #Migraine #LumbarPunctures #bloodpatch #salinepatch #TheMighty #MightyTogether #MightyMinute #Hope #Joy #happy #scared


How long does it take to get Lumbar Puncture results?

I had a lumbar puncture on New Year’s Eve after my neurologist suspected the I may be suffering from Idiopathic Intracranial Hypertension. This was my first lumbar puncture and I never asked how long it would take to get the results. If you have, or someone you know has, had this procedure before can you tell me how long it took to receive your results? #IIH #LumbarPunctures #AutoimmuneDisease #LivingWithPOTS #Anxiety #PanicDisorder #Depression #ChronicFatigue #Labyrinthitis #ChronicEpsteinBarrVirus #GastroesophagealRefluxDisease #IrritableBowelSyndromeIBS #PeripheralNeuropathy #RaynaudsPhenomenon #ChronicVestibularMigraine


How do you cope when you didn’t think the pain could get any worse? #DistractMe #IdiopathicIntracranialHypertension #Migraine #Headache #ChronicPain

First post!! I went to the hospital for a #LumbarPunctures today. My neurologist wanted to check if my chronic headache/migraines, fatigue etc is #IdiopathicIntracranialHypertension or really bad persistent #Migraine .

The Lumbar Puncture was unsuccessful. The doctor kept hitting vertebrae, causing pain and twitches down my left side. After about 8 attempts he decided to call it, and has requested another procedure under X-ray guide. This then means another 3-4 week wait. Now I can barely move on top of awful head pain etc.

How do you cope when you didn’t think pain could get any worse?


My story part 1

I have suffered with #Epilepsy since I was 5 years old, but was constantly told I just need more sleep till my sister did her first aid course and had me go see my gp asking for a referral - turned out she was right. I was 13. No medicines worked. We tried countless drugs from the age of 13 onwards but it only carried on getting worse. #JuvenileMyoclonicEpilepsy also #Photosensitive -epilepsy. Then while in college I started getting a crazy #Migraine and eventually regardless of whatever I took nothing would make it go away. So I slept at home for nearly a month. Once it became better and I tried getting out of bed... BAM! Paralysed. I was rushed to hospital and after doing three wrong #LumbarPunctures they found nothing. The worlds best nerve specialist also told me I was lying. -that day, those words... that lady, I will never forget. Going back alittle - I was in hospital for over three months with this now... at the time for some reason I didn’t think anything of it and just got oncwith whatever. Towards the end, with no help from the doctors there, my dad helped me learn to walk again using their frames and crutches when he would come visit. They sent me home with the diagnosis of #Paraparesis and #Parasesis