Aa
Need help please!
Hi everyone. I have been pretty quiet for the last week or so because I am having a really hard time. JJ- I'm trying to keep my head up :)
Anyway, I had my LP on Tuesday which seemed to go well minus the sharp weird pain when he pulled the needle out (the fluid collection took 15 minutes once the needle was in. About 2 hours later I started having horrible excruciating pains in my neck. I was sent to the hospital for a new set of full spine MRIs with and without contrast to look for bleeding. That came out negative for the bleeding but obviously not without other findings which were expected (according to them, that's actually what the er doc said). Other than the lesion on my brain stem I'm not sure what they are talking about.
They treated me with morphine and Valium for muscle spasm torti something or another. Basically the muscles stretching from the base of my skull down my back on both sides are spasming. Along with the spinal headache. It would just be too much to ask not to catch that particular statistic apparently.
The spinal headache finally let up last night but the neck spams won't go away. My tizanidine isn't helping. This is terrible excruciating pain and my head feels like it weighs 10,000 pounds and I can't move it. My dr said I just have to wait for it to pass? Has anyone had this? Does anyone have any ideas on what I can do for relief? I am feeling really discouraged. :(
Thank you in advance for your help!
Anyway, I had my LP on Tuesday which seemed to go well minus the sharp weird pain when he pulled the needle out (the fluid collection took 15 minutes once the needle was in. About 2 hours later I started having horrible excruciating pains in my neck. I was sent to the hospital for a new set of full spine MRIs with and without contrast to look for bleeding. That came out negative for the bleeding but obviously not without other findings which were expected (according to them, that's actually what the er doc said). Other than the lesion on my brain stem I'm not sure what they are talking about.
They treated me with morphine and Valium for muscle spasm torti something or another. Basically the muscles stretching from the base of my skull down my back on both sides are spasming. Along with the spinal headache. It would just be too much to ask not to catch that particular statistic apparently.
The spinal headache finally let up last night but the neck spams won't go away. My tizanidine isn't helping. This is terrible excruciating pain and my head feels like it weighs 10,000 pounds and I can't move it. My dr said I just have to wait for it to pass? Has anyone had this? Does anyone have any ideas on what I can do for relief? I am feeling really discouraged. :(
Thank you in advance for your help!
I am so sorry to hear you had such a rough time with your LP. I am so glad to hear you are feeling better & you have been started on a DMD. I cannot think of the word you would use for your change in dx from CIS to RRMS but I do like the "upgraded" term which gave me a chuckle.
Take Care,
Karry.
Take Care,
Karry.
Hi Laura!
Thank you for asking. Yes I had my follow up today and will be starting rebif soon. I was upgraded (I'm pretty sure that's not the right word, lol) from CIS to RRMS as well. I posted an update about my visit earlier today titled "update: RRMS and Rebif" which includes a couple of questions.
I do hope my post helps others and I really hope it doesn't discourage anyone from needed testing. My Dr said today my case was one of the rare really bad ones and he is actually altering his technique because of it. He had me sit up to place the needle then lie down on my side to get the fluid. He said he is no longer going to have any of his patients lie down unless he has to take pressure readings. I had a lot of fluid collected in my back by the time they did the patch and he thinks his technique accidentally tore the dura a little causing the headache.
Thank you for checking in on me and I am all better now so big hugs back! :) I hope you are doing well!? :)
Thank you for asking. Yes I had my follow up today and will be starting rebif soon. I was upgraded (I'm pretty sure that's not the right word, lol) from CIS to RRMS as well. I posted an update about my visit earlier today titled "update: RRMS and Rebif" which includes a couple of questions.
I do hope my post helps others and I really hope it doesn't discourage anyone from needed testing. My Dr said today my case was one of the rare really bad ones and he is actually altering his technique because of it. He had me sit up to place the needle then lie down on my side to get the fluid. He said he is no longer going to have any of his patients lie down unless he has to take pressure readings. I had a lot of fluid collected in my back by the time they did the patch and he thinks his technique accidentally tore the dura a little causing the headache.
Thank you for checking in on me and I am all better now so big hugs back! :) I hope you are doing well!? :)
By now you have had your follow-up, right? I hope it went well and the neuro had a course of action that includes a DMD. Thanks for sharing your spinal leak experience - it's important for others to hear about this in case it happens to them.
gentle hugs, Laura
gentle hugs, Laura
Hi, babybear. :)
I just found your post. It was hiding from me.
I just want to leave some love and hugs here for you and say that it's really good to see that you finally got some relief. You deserve it! I hope your follow up goes well and I'll be looking for your update.
Bless you.
I just found your post. It was hiding from me.
I just want to leave some love and hugs here for you and say that it's really good to see that you finally got some relief. You deserve it! I hope your follow up goes well and I'll be looking for your update.
Bless you.
Hello! I hope you all had a wonderful Mother's Day and this finds you well! :)
I am happy to report I am finally doing much better! Things got really bad for a minute there and I apologize for not thanking you all sooner!
Invida, Thank you for taking the time to post and the kind words!
Dee, Thank you as well! The doc did say it was the LP causing both the spinal headache and the torticollis, you were right, that is what they said I just couldn't remember the word.
JJ, once again, you are amazing, thank you! :) Unfortunately, I spoke to soon in my original post about the headache being gone. The night before I had downed 2 5-hour energy things (I hate those things but my bf thought they might help and I was desperate), 2 starbucks frapaccinos, a Mt. Dew and a Dr. Pepper (so much for my diet, lol) which greatly minimized the headache while it lasted. I should have actually gotten up before writing to see if the headache stayed gone. It was not only back but much worse! I seriously wondered if I had a brain tumor instead of lesion and gradually freaked myself out before remembering earlier advise from you which helped me chill out and calm down as stress could not have been helping things.
After reading your post I tried icing my neck and head and it did help. I had already tried the whole heating pad and hot bath thing for it... that wasn't the smartest thing I have done! Your suggestion on gentle massage also reminded me that I have a friend certified in therapeutic massage and called her. She was able to come out Sunday morning which did at least get me through the Mother's Day dinner I was too stubborn and stupid to cancel. Did I mention Stubborn is my middle name?
My Dr's did change my muscle relaxer, which also provided little relief. I already had Norco, Motrin and Naproxyn which did nothing. By Monday morning I was pretty convinced something was seriously wrong and I simply could NOT take the pain anymore and literally showed up at my Dr's office; I did not care at that point that they were "completely booked", I was not going to take no for an answer as far as seeing my Dr went. When I showed up they took one look at me and made room for me. My Dr informed me that I had a very bad spinal headache which can be very traumatic. He said unfortunately no pain meds as I had already found out would relieve it. I was sent home to be on strict bed rest laying flat and drinking lots of caffeine with instructions to call back if it wasn't better by Wednesday (more tears). By this time I was very nauseous and vomiting (sorry), had near constant ringing in both ears and dark objects (like my tv which was off and my furniture, etc) was glowing with this weird halo and light colored objects had just the opposite with dark rings around them and my vision had lots of dark spots in it. I was terrified.
I was supposed to have a follow up with my Neuro on Tuesday at 1 but I called that morning to ask if I could have a phone appointment instead due to my headache/neckache. The nurse, who was already aware of what was going on, was concerned that I still had the headache and said she would talk with the Dr when he came in and would call me back. At 1:30 she called me back and said probably the bet words I have heard in recent years; "Dr. said this has gone on long enough, too long in fact, and wants you to go to the ER for the blood patch right now". I literally broke down into actual sobs of relief! I felt slightly crazy for a minute, lol. Anyway, We quickly made arraignments for my daughter and after an excruciating drive I got to the hospital and within 30 minutes I was speaking with the anesthesiologist, and within the hour I was in the OR.
After about 15 tries, 3 blown veins including the artery in my wrist (I never have been an easy draw), they finally got as much blood as my body was willing to give up and administered the blood patch. I told the very apologetic nurse and Dr they could have poked me a thousand more times to get rid of that pain!
They are not kidding when they say relief is almost instant. They sat me up to see if the headache was gone and for the first time in 8 days I could sit up without excruciating pain. I was informed I would still have a couple more days of the neck spasms which should, and did, improve as well as the tension headache that resulted from it. That I could deal with! I was extremely sore for a few more days and could not bend over without pain in my back and a sharp shot through my head but now I am for the most part all better and back to work! :)
I am pretty sure if anyone ever suggests a needle anywhere near my spine I'll tackle them! lol I am glad the ordeal is over :) My follow up was rescheduled for tomorrow at 1 and I will update everyone after as this appt is to discuss DMD treatment among other things. As of now I am officially diagnosed with CIS Brain Stem but he may change that to CDMS tomorrow.
Thank you all once again for the advise, caring words, and helping me find my way to my happy place when I get discouraged! Hopefully I will be able to pay it forward :)
love and hugs!
Trish
I am happy to report I am finally doing much better! Things got really bad for a minute there and I apologize for not thanking you all sooner!
Invida, Thank you for taking the time to post and the kind words!
Dee, Thank you as well! The doc did say it was the LP causing both the spinal headache and the torticollis, you were right, that is what they said I just couldn't remember the word.
JJ, once again, you are amazing, thank you! :) Unfortunately, I spoke to soon in my original post about the headache being gone. The night before I had downed 2 5-hour energy things (I hate those things but my bf thought they might help and I was desperate), 2 starbucks frapaccinos, a Mt. Dew and a Dr. Pepper (so much for my diet, lol) which greatly minimized the headache while it lasted. I should have actually gotten up before writing to see if the headache stayed gone. It was not only back but much worse! I seriously wondered if I had a brain tumor instead of lesion and gradually freaked myself out before remembering earlier advise from you which helped me chill out and calm down as stress could not have been helping things.
After reading your post I tried icing my neck and head and it did help. I had already tried the whole heating pad and hot bath thing for it... that wasn't the smartest thing I have done! Your suggestion on gentle massage also reminded me that I have a friend certified in therapeutic massage and called her. She was able to come out Sunday morning which did at least get me through the Mother's Day dinner I was too stubborn and stupid to cancel. Did I mention Stubborn is my middle name?
My Dr's did change my muscle relaxer, which also provided little relief. I already had Norco, Motrin and Naproxyn which did nothing. By Monday morning I was pretty convinced something was seriously wrong and I simply could NOT take the pain anymore and literally showed up at my Dr's office; I did not care at that point that they were "completely booked", I was not going to take no for an answer as far as seeing my Dr went. When I showed up they took one look at me and made room for me. My Dr informed me that I had a very bad spinal headache which can be very traumatic. He said unfortunately no pain meds as I had already found out would relieve it. I was sent home to be on strict bed rest laying flat and drinking lots of caffeine with instructions to call back if it wasn't better by Wednesday (more tears). By this time I was very nauseous and vomiting (sorry), had near constant ringing in both ears and dark objects (like my tv which was off and my furniture, etc) was glowing with this weird halo and light colored objects had just the opposite with dark rings around them and my vision had lots of dark spots in it. I was terrified.
I was supposed to have a follow up with my Neuro on Tuesday at 1 but I called that morning to ask if I could have a phone appointment instead due to my headache/neckache. The nurse, who was already aware of what was going on, was concerned that I still had the headache and said she would talk with the Dr when he came in and would call me back. At 1:30 she called me back and said probably the bet words I have heard in recent years; "Dr. said this has gone on long enough, too long in fact, and wants you to go to the ER for the blood patch right now". I literally broke down into actual sobs of relief! I felt slightly crazy for a minute, lol. Anyway, We quickly made arraignments for my daughter and after an excruciating drive I got to the hospital and within 30 minutes I was speaking with the anesthesiologist, and within the hour I was in the OR.
After about 15 tries, 3 blown veins including the artery in my wrist (I never have been an easy draw), they finally got as much blood as my body was willing to give up and administered the blood patch. I told the very apologetic nurse and Dr they could have poked me a thousand more times to get rid of that pain!
They are not kidding when they say relief is almost instant. They sat me up to see if the headache was gone and for the first time in 8 days I could sit up without excruciating pain. I was informed I would still have a couple more days of the neck spasms which should, and did, improve as well as the tension headache that resulted from it. That I could deal with! I was extremely sore for a few more days and could not bend over without pain in my back and a sharp shot through my head but now I am for the most part all better and back to work! :)
I am pretty sure if anyone ever suggests a needle anywhere near my spine I'll tackle them! lol I am glad the ordeal is over :) My follow up was rescheduled for tomorrow at 1 and I will update everyone after as this appt is to discuss DMD treatment among other things. As of now I am officially diagnosed with CIS Brain Stem but he may change that to CDMS tomorrow.
Thank you all once again for the advise, caring words, and helping me find my way to my happy place when I get discouraged! Hopefully I will be able to pay it forward :)
love and hugs!
Trish
COMMUNITY LEADER
Oh baby,
Anyone would be feeling discouraged, that sounds horribly painful! The good news is that your spinal headache has finally let up, so half the problem should be over and things should start getting better soon but honestly, i would of expected you'd to of been looked after a bit better with pain relief, on top of the muscle relaxant. (Tizanidine is the generic name and Zanaflex is its brand name)
"Tizanidine is a short-acting muscle relaxer. It works by blocking nerve impulses (pain sensations) that are sent to your brain. Tizanidine is used to treat spasticity by temporarily relaxing muscle tone." drugs .com
I'd say the muscle relaxant may not be the right one for you, which happen's and if sx relief is not cutting it, it usually means you need to try one of the alternatives eg Baclofen (Lioresal, Lyflex), Gabapentin (Neurontin) etc or sometimes even a combination of meds are need before you get it right.
The spinal headache from the LP probably made you inadvertently keep your neck stiff, to minimise the pain increase from your head moving but this wouldn't be helping the spasms. It's quite possible its been making it worse because stretching, moving to keep joints from stiffening, strengthening and gentle massage are all recommended for reducing spasms and spasticity.
Alternating with heat and cold can offer some relief but remember that heat is a very common cause of pseudo relapses, so don't try hot baths, showers or spas to relieve muscle spasms caused by MS!
I'm sorry i didn't get to respond hours ago, please call your doctor first thing monday, if the spasms don't start getting better now the spinal headache has gone but my fingers are crossed that by then you'll be on the mend, make sure you call him/her for help if your still suffering!
Hugs...........JJ
Anyone would be feeling discouraged, that sounds horribly painful! The good news is that your spinal headache has finally let up, so half the problem should be over and things should start getting better soon but honestly, i would of expected you'd to of been looked after a bit better with pain relief, on top of the muscle relaxant. (Tizanidine is the generic name and Zanaflex is its brand name)
"Tizanidine is a short-acting muscle relaxer. It works by blocking nerve impulses (pain sensations) that are sent to your brain. Tizanidine is used to treat spasticity by temporarily relaxing muscle tone." drugs .com
I'd say the muscle relaxant may not be the right one for you, which happen's and if sx relief is not cutting it, it usually means you need to try one of the alternatives eg Baclofen (Lioresal, Lyflex), Gabapentin (Neurontin) etc or sometimes even a combination of meds are need before you get it right.
The spinal headache from the LP probably made you inadvertently keep your neck stiff, to minimise the pain increase from your head moving but this wouldn't be helping the spasms. It's quite possible its been making it worse because stretching, moving to keep joints from stiffening, strengthening and gentle massage are all recommended for reducing spasms and spasticity.
Alternating with heat and cold can offer some relief but remember that heat is a very common cause of pseudo relapses, so don't try hot baths, showers or spas to relieve muscle spasms caused by MS!
I'm sorry i didn't get to respond hours ago, please call your doctor first thing monday, if the spasms don't start getting better now the spinal headache has gone but my fingers are crossed that by then you'll be on the mend, make sure you call him/her for help if your still suffering!
Hugs...........JJ
I am really sorry you are having so much pain. I have had an LP and the headache lasted for more than a week. The doc did not tell me I had to lie flat for about 8 hours after the LP. I kept taking pain meds for days. It also affects the neck but I don't know if it's the LP that is causing the spasms from the neck down.
The good thing is your doc is aware and said it will go. It's really bad for some people. Caffeine helps and so the meds I take for my migraines helped me. Do you feel it more when you get up and relieve when you lie flat? Did the doc say if it was the LP?
Torticollis is most likely what you heard and that is muscle spasms in the neck which is very painful. Your level of pain makes it seem as if that is the source of your pain. For that you definitely need treatment. I imagine the doc has given you meds for it. I would contact him/her again if you are not feeling better so they can try something else.
I really hope you feel better soon.
Dee
The good thing is your doc is aware and said it will go. It's really bad for some people. Caffeine helps and so the meds I take for my migraines helped me. Do you feel it more when you get up and relieve when you lie flat? Did the doc say if it was the LP?
Torticollis is most likely what you heard and that is muscle spasms in the neck which is very painful. Your level of pain makes it seem as if that is the source of your pain. For that you definitely need treatment. I imagine the doc has given you meds for it. I would contact him/her again if you are not feeling better so they can try something else.
I really hope you feel better soon.
Dee
Hi.
I'm sorry that I don't have anything helpful to say. I've never had an LP. Can you call your doctor again and press on him a little more about the fact that you're in a lot of pain and really needing some kind of help? Maybe he'll be more willing to think of something you could do, if there is anything.
I hope you feel much better soon.
I'm sorry that I don't have anything helpful to say. I've never had an LP. Can you call your doctor again and press on him a little more about the fact that you're in a lot of pain and really needing some kind of help? Maybe he'll be more willing to think of something you could do, if there is anything.
I hope you feel much better soon.
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