Newly Diagnosed and strange reaction to spinal tap
Posted , 4 users are following.
Hello everyone! I am so happy that I found this community! I was just diagnosed with IIH last Thursday (the day after my birthday, so that was a fun bday present!!) but I think I've had this for around seven years. (Since I was around 12)
Has anyone had a really bad reaction to their lumbar puncture? I knew about the post spinal tap headache, but right before the needle was pulled out I was in excruciating pain--the pressure in my head was so bad. I told the doctor doing the LP and he just said: "that's weird, it should have felt better since the pressure was high" I stayed at the hospital and they gave me fluids, it helped a bit, but the pain was some of the worst of my entire life. Has anyone else had horrific pain at the last half of their LP? Everything I've read has told me that when you have iih you feel so much better without the fluid and I'm just really disheartened that I felt so much worse.
Ive asked a couple of doctors but they just look at me like I am crazy. When I went in to do the bloodpatch since the pain was becoming unbearable, the doctor who did that said that doesn't sound "right". When I asked my Neurologist, she just said that's weird, but didn't offer any insights.
I'm feeling really blue about it all. My doctor spent five minutes talking to me. She said you have iih. I think it's primary. And that was it. She didn't tell me what that meant or what it would mean for my life, or what the next steps were. I have chronic migraines, but I also have extreme exhaustion. I asked her if this could be caused by the iih and she just shrugged it off. I'm feeling really sad at the lack of communication. What did your doctors tell you when you were first diagnosed? She did put me on Diamox, 250, and so far that has been miserable. I've taken it four times now and am already feeling much worse. (I stoped taking it today because it lowers my bp to around 70/40 with a heart rate of 150. I have pots so I'm kind of used to low bp, but it was getting really bad)
I'm just really discouraged, because it seeens like all the things that normally help people with IIH, have been miserable for me. Can anyone else relate?
(If you made it this far, you deserve a Unicorn!!!)
0 likes, 3 replies
sparkleyeyes06 Queenofinfirmum
Posted
Hi!
I didn't want to read your message and leave so here I am 😊 recently diagnosed myself after a year from hell 😐 I can't say I had the reaction to the needle you did, maybe they have hit a nerve on exiting? Just a thought? I experienced a horrific LP headache for a week afterwards which rendered me unable to sit up or even function! I have however had very little communication from my doctors other than loose weight! I am however a big girl and could benefit from losing a bit but that is there primary focus and it's very frustrating! I find myself googling a lot and trying to find answers that way! I think because it is so rare that normal doctors aren't well informed and unfortunately a bit flippant with regards to symptoms 🤔 I was advised to stop taking the diamox afree the LP for a few days till I felt 'normal' then resume, as they've lowered your pressure and the diamox continues to do this, it can't hurt to ask! I also suffer from chronic migraines which are being put down to the IIH, I take propranolol for these and it is truly wonderful! Have you considered this? I take 160mg slow release and have done for around 12 months now! I hope iv sorta helped, even to let you know you are not alone 😊 keep your chin uo, it's a daunting diagnosis that comes with a lot of uncertainty xxxx
sarah53175 Queenofinfirmum
Posted
Hi
I was diagnosed a week ago and had the lumbar puncture which was painful but as u say was horrific headache after
I like u didnt feel any better 😩I was surprised that my neurologist said to take no more pain killers what so ever and that the symptoms wpuld ease within 7 days its been more than that now and i find that theyre not as severe but still have the punding in my ear😩I am awaiting a neurology out patients appointment and i have been started on 500 mg diamox at night
This has been a wake up call as the neurologist says i also meed to lose weight which shud also relieve the symptoms
I too feel v v tired and weak and am currently off work
Ginny_Weasley Queenofinfirmum
Posted
Hi,
When I was diagnosed with IIH the lumbar puncture felt good upon initial removal of csf. Well, good in the twisted way of big needle in back and a weird feeling like they hit a bone sounding like nails on a chalkboard, then suddenly the intense pressure was gone.
The following day got the low pressure headache and made it about a week before receiving an epidural blood patch.
Things to consider...
You brain is used to being under that kind of pressure all of the time. It will take time to adjust.
If your pressure was high did they "normalize" it? Or esentially drain some off to relieve the pressure. If they took out a lot it may be too much for what you are used to right now and adding diamox and a leak just makes it worse.
Diamox is the worst at first, until you have your low pressure headache squared away I probably wouldn't take anymore, but do speak to your doctor. I have been on it almost thee years. When you get to a stable dose it will level out, took me around a month. You'll stop feeling like you're tingling to death, and the intense fatigue does get better. A dose increase or a skipped dose later down the road can make those side effects return briefly.
I think you should speak to the doctor that manages your POTS about the diamox too and new diagnosis. Your blood pressure in combination with heart rate suprised me until I read about the POTS. Your neurologist should also be aware of the POTS treatments you use. I would interaction check everything, I like drugs.com interaction checker because you can create a profile and save what you take. Some treatments can be highly interactive and you need to be sure of what to expect.
As far as information about the diagnosis, you'll come to realize most doctors don't know much about it, likely because it is so rare. I read a lot of medical literature and studies so I can better understand at least for myself.
I know your low pressure headache will be gone soon! Feel better! And lay flat!