August 27, 2017
has anyone had a lumbar puncture? my dr wants me to have one, but I am not sure about it. I am thinking of getting a 2nd opinion. I have had migraines for 15 years, and recently I started getting hemiplegic migraines.
August 28, 2017
I have had lumbar puncture 3 times. It was horrific! They were testing me for pseudotumor cerebri. I didn't have that and still continue with chronic migraines. Mine are hemplegic also. The doctors suggested I lose weight - lost 200 pounds, stopped smoking, no caffeine and still the migraines continue. I would get a second opinion. What are they trying to rule out by doing the lumbar puncture?
August 28, 2017
From what I've read, people have very different experiences with lumbar punctures. For me, it was no big deal compared to what I deal with every day. I had some slight discomfort in the back/abdomen which lasted for less than 24 hours. I had some increased headache for a day or two (nothing as bad as a migraine.) I have a headache every day anyway. Other people have a painful experience. From what I've read, I think part of it depends on your spine/bones/how everything fits together.
For me, the lumbar puncture was worth it because after 3 years and 5 normal brain MRI's, 3 normal brain CT's, blood tests, it was the first test that came back abnormal. This was after my neuro had poo-poo'ed my concerns and my husband's coworker had suggested we get my CSF pressure checked because it had taken them 8 years to get his wife correctly diagnosed as having a CSF pressure problem (hers was too high--turned out mine was too low.) A different specialist ordered the test for us. After that, they did another lumbar puncture to insert dye (it also went fine, almost no pain), and did a mylegram/CT of my full spine/brain and found on CT I have bad dura in my lower spine that is intermittently leaking and likely contributing to constant low pressure headache, in addition to my migraine. We went to see a headache specialist in a different city who looked over everything and thought this was likely the issue as well. That's something that can often be fixed/improved, so I am glad I had the LP done so we had another avenue to pursue to see if we could improve my headaches, even if I will always deal with migraine disease.
So, I would ask your doctor why they want to do it and what they hope to rule out, but if it were me and I were very sick (as I was after three years--getting sicker by the day, housebound, could no longer drive, had to stop working, could no longer be exposed to light, headache/migraine every day, had to start learning to use a screen reader in order to type because using my eyes at all triggered migraine) it would be worth it to be to either get some answers or rule something out.
August 28, 2017
Hhe wants to test the pressure and for ms as I have a family member with ms. My only hold up on the test is that my neurologist, and the hospital where the test would be done, is almost two hours away. I have an appointment with a migraine specialist who is local to me in two weeks. He just signed on with the hospital, which is why I did not go to him first.
I went to the guy further away because I needed to be seen by someone- I had three major migraine attacks where I could not talk, use my right side, was confused, my vision was blurry, i was weak, and dizzy. I have had a number of lesser attacks where I could still speak but I would have to search for my words, and my voice was weak. Others where I was confused, my vision was blurry, I was weak and shaky. And of course the pain. Every day, the pain. This guy was the only neurologist who could see me on an emergency basis.
They started me on topamax 50 and did a ocipital nerve block with just lidocaine. That kinda helped. The pain is better, but the neurological symptoms are still there. Since my last bad migraine, my face and hands have switched between buzzing and shocking electric pain. However we are not sure if it is from the headaches or the topamax.
I am leaning towards doing the lp- if I can get it done locally. I am not keen on a 2 hour drive after a lp.
August 29, 2017
I'm so sorry you are having so many awful symptoms. I hope you get some answers and rellief soon.
Yeah, they make you have a driver after the LP, but you definitely want to be close to home since you want to immediately lie down flat and stay that way for at least 12 hours. If you have an appointment with a headache specialist that's local in two weeks and your condition isn't worsening, I could see why you would want to see if you could wait and have it done at the local hospital.
I assume your current neuro can't order it done locally? Any chance your GP could order it if you explained the problem? I had mine ordered by an ENT doctor, so anyone can do it. It wouldn't be worth it to me to suffer the two-hour drive just to have it done two weeks sooner, but for the price of a few phone calls, it might be worth having the information in hand when you go to see the migraine specialist.