Lay flat for AT LEAST 48 hours (as long as you can up to 3-4 days), don't bend over, don't lift ANYTHING, be very careful when you sit up, do it slowly and as little as possible. When you eat or drink, try to do it lying down. Try to stay on your back as much as possible, but your side is alright. With the caffeine, also drink MORE water cause caffeine can dehydrate you even MORE!!

Try not to worry about it. They say that it happens to LESS THAN 10% of people, and I did not do what I should have done, so this was more than likely my fault (being dehydrated). The LP isn't bad, I was nervous, but besides the pressure, I felt nothing (after the numbed me), and it took maybe 10 minutes.

They said the h/a would have gone away on its own eventually, but the pain is SOOO horrible. When I was in triage, and they were asking me questions, after about 1 min of sitting up I burst out in tears, and layed on the COLD HARD FLOOR to answer the questions. They said, "Ma'am, the floor is dirty and nasty." I told they I didn't give a da*&, if they thought it necessary to ask me these questions before they gave me a bed (when they KNOW what an LP H/A is), I was going to lie DOWN somewhere because my h/a was DEBILITATING!!!

This post is as a member of this forum, as a person with MS, and one who is currently on day two of STEROIDS...and not as a moderator...


Don't be so negative about Neuro's that are NOT MS specialist. There are a lot of very good neuro's who treat many of us who are NOT MS Specialists. That doesn't mean they don't know what they are doing. Sorry, but you just keep harping on that and it just isn't such a good thing. In fact, the neurologist that has been treating me for the past 7 years is not an MS Specialist, but is very well respected throughout the MS Community by her peers who are known as specialists.

Also, I spent 20 years being treated by military doctors and over all I had excellent care...I think I can honestly say I had only one bad experience with a military doctor and that was when we were stationed in the Philippines...she was NOT a good doctor to begin with and I am not even sure how she passed her boards. There are also other military people here who may not speak up, but I do...I am very pro-military and am currently under the TriCare system and have not had any problems.

You are entitled to your opinion just like the rest of us...but please be cognizant of how it reflects on the community as a whole.

Thanks for allowing me to express my opinion...

I myself am very pro-military also. I was on TriCare for 15+ years while I was married to my retired-military ex-husband who if it wasn't for the military doctors he wouldn't be with us today. He had a tumor in his sinus cavity that went into his brain - the military neuro in Texas that he saw knew just what this rare tumor was and had him in surgery at Walter Reed in DC within 24 hours and saved his life.....

I personally feel that yes we need to go by what our neuro's are telling us but we also need to do our own research and listen to what people tell us on the boards. Experience from the ones who have or are going through what we are is the best advice as far as I am concerned.

I am day 3 of my Steroids...... I thought they were making me depressed but maybe I was wrong.

I'm sorry that you went through that severe headache after the lumbar puncture, but I feel I have to say something about MS neuros as well.

I was diagnosed 31 years ago now, so have been seeing neurologists for a very long time. Not once have I ever seen a neuro who specialises in MS, and every neuro except one, has given me excellent care. In 31 years, there has just been that one that I didn't like, and that was because of his attitude; not his medical care. All the rest have been wonderful.

Just my 10cents worth.

I got no instructions from the doc or his nurse either, in fact when I mentioned to the nurse that I heard about the caffiene she gave me that moose in headlights look

I learned everything here...funny thing was even knowing all this in advance, after the hospital people acted like it was no big deal....I didn't know what to think. I did what my NT buddies said and laid in bed for 3 days, with a headache....finally on day 5 I called and raised hell and got a the red carpet treatment as I entered the ER where they were waiting for me with fluids, demerol ( I guess to calm me) and the blood patch. I felt much better just like you...what an ordeal!!! (Then the test was negitive after all that)

So glad you are feeling better!!!!!!

Lets all move to Tasmania!!!

I am sorry you didn't get instructions GJ...that's just not right

Even after following the instructions exactly, I've had the LP headache twice. In my experience, it really has nothing to do with the procedure, it has to do with how your body heals. I had the LP done by the same neuro all 4 times...two with a headache and two without...go figure. And I am a stickler for details! After the first one with the headache and suffering for 4 days...I literally crawled into the ER and layed on the floor in the front of the patient registration desk filling out the paperwork b/c I could not sit up at all. The person at the desk was very annoyed with me, but I honestly could not have cared less...

Then the fun came with then radiologist came out to get me and found out he couldn't do the patch under fluoroscopy b/c I am allergic to the dye. He had to call the anesthesiologist to come to the rescue. When they got done and rolled me over on my back, and tried to raise me up, I passed out. Think I scared everyone! Needless to say, I've been through the ringer with LPs and headaches. And then I had 2 more after that! The 4th one I had the headache and I went in for the blood patch right away. My neuro knew better than to make me wait more than 24 hours! It was a breeze b/c the anesthesiologist already knew the routine with me! He knows me personally! That's a help.

Bottom line...it's how you heal, not necessarily the procedure. I was flat on my back and followed the procedures to the letter each and every time. What I find coincidental is that the LPs that were negative for MS indicators were the ones that I did not have the neadache. The two positive ones I had the headache! Just coincidence say the neuros

I am glad you are feeling better too...I think everyone is. Those LP headaches are worse than migraines (I know from experience).

I Appreciate your view, and please don't mistake my not liking the military medical system as not being pro military. My husband has been in the military for 17 years and we are staying in for the long haul. I am very involved in the military community. Truth is, military docs are allowed to practice with a lot less training than a civilian doc. They usually do go and finish their educations... but...

With that said, I have not had the same treatment as you have had from the military health care system. My 17 year old daughter (well, she was my niece, but lived with us) was sent home 3 times before they found she had a life threatening pulmonary embolism. EVEN after me telling/begging them to do a CT scan. Finally on the 3rd visit to the ER (in 2 days) they took me seriously. Before the third visit they sent her home on motrin (even though she was rolling on the floor screaming in pain) That is one of my running jokes. Go to a military doc, and you get sent home on motrin (this goes FAR beyond this situation).

It took 3 months and almost weekly trips to the ER to diagnose my Gall stones. I was in a heckufalot of pain during those 3 months, and whenever I went to the ER or my PCM, I was looked at like I was nothing more than a drug seeker (because of course by the time I got there the pain had dissipated), I asked for u/s several times, but they told me it wasn't necessary. Motrin....

On my first visit of infertility treatments (ever 10 years ago) I was told, oh don't worry, we'll have your preggo in less than 3 months. 6 months later, on my last round of chlomid, my doc told me I would move on to injectables the next month. When I came in the next month, my doc had been deployed, and I was given a new doc. She took one look at me and said, "I am not helping you until you lose weight. You are to fat for me to get you pregnant. We have already wasted enough of our recourses on you. We have better luck with skinny people (I was 230 pounds)." I could not garner anything to say except, "Since I am to big to get pregnant, should I kill myself so as to not waste the air that skinny people breath?" I walked out, and never looked back. I fell into a state of depression far beyond anything I have experienced. I could have fought it, and should have turned her in, but you can't imagine what that did to me...

5 years later I go to a new medical facility. When the doc walks in, I say, "I have one question for you... will y ou ever say I am to fat to be treated (I was 260 by now). He looked at me in the weirdest way, and when I told him, he was horrified that I was treated that way. I FINALLY cried over the whole situation. They treat me. Find out my hubby is the one with the main problem also. I am still not pregnant, nor will I ever be.

It took them 1 month to diagnose a plantar wart, that was SO BAD, I was on crutches by the time it was treated.

Each time something finally got done was because of MY research and because of what I told them was wrong with me. That is why I so strongly advocate taking care of yourself and doing research.

I am also the person that when something is wrong with me, I am GOING to go to a SPECIALIST!!! I don't care how much experience a general practitioner has, the fact of the matter is, they will not be on top of it like a SPECIALIST. When I had bariatric surgery, I could have gone through the military, in which the surgeon was a GENERAL surgeon who took one class in bariatric surgery, and did 100 surgeries. Heck no. Only the best for me... BUT that is me. I waited till he deployed, and went to a civilian (ex-air force) bariatric surgeon. I also traveled 2 hours to see him, cause he was the BEST. I could have seen one of 10 that was within 1 hour of me, but I researched and found the best... When I followed up with the general, wanna be bariatric, surgeon for my 1 year, he had no clue what tests to run, when I gave him the list my surgeon gave me, I had to explain why, and he didn't think I needed to take B-12 as often as I was, even though there is no known toxicity level to b-12, and I don't absorb ANY because of my surgery.

Maybe you missed where I do intend to follow up with the neuro I am seeing. My choice because I really like her (although she did not give ANY instructions on the LP ). I also think, in her limited experience with MS, she is knowlegable and she wants to learn. HOWEVER, to have my own peace of mind, I must see the best. Get his opinion. Get what he thinks I should do with the meds (because when I asked my neuro she was honest. She does not know the differences in the meds, doesn't know how they work, doesn't know which one I should take, and says I should choose. She also knows nothine of CAMS, which is big for me). Because she was honest in what she DOES NOT know ( and lots of docs are not honest about that) I trust her judgment. I know she will always be honest with me. She also thinks she needs the LP results to give me a definitive MS diagnosis... which isn't true either. BUT, when I get the answers I want from the specialist, I want to follow up with this neuro because I believe she want sto learn, I am very big on my own care, and I will be able to answer questions, as will the MS specialist that I (or she) can talk to.

There are a lot of other horror stories I could tell you. Besides my annual PAPS, I hardly EVER go see the doctor. I have enough motrin to last a lifetime!! Literally. I was surprised. The other day, DH was sent home with a 104 temp, and they gave him TYLENOL!!!! I could not believe it.

Please don't mis-understand. I love the military. I have been treated by some GREAT docs, but the bad (because they were so serious) far outweigh that. I know this happens in the civilian world. Don't get me started on those either (I am a nurse and have worked with many docs) which is why I am so big on specialists... I have seen general docs cause far more problems than not. I just don't talk about the civilian docs cause I only work with them and I am not treated by them (except the ones I have sought out).

One other HUGE problem I have with the military system is there is no continuity of care. I think that plays a huge part in general patient dis-satisfaction. I worry about that with my neuro (which is ONE OTHER reason I am getting an outsider involved in my care). What if she deploys, and I get someone not so knowlegable, who hasn't dealt with MS, nor wants to learn about it. Well, then I fall back on the doc I saw and will follow up with yearly (the MS Specialist - which BTW, he is 3 hours away).

Hope I have cleared some things up. I guess I am much more rigid and judgemental because I work in the health care field, and when something serious has happened, I have basically found the answer myself, and had to tell the doc what it was. Military or not (I just happen to see military docs). If they were civilian, I would do just as much complaining! Don't even get me started on why I won't see a phsychologist/psychiatrist/therapist (non-military or not)...LOL

Really, I do appreciate your input and everyone's. I hope you can see why I have the issues I have. This does not happen to everyone, nor is it every doctor. I am very pro-military. I wish they could be more consistent, and send them to more CE classes.

BTW - I LOVED every doc that treated me the last 2 days in the hospital. They were great, and I did not get motrin ONE TIME

OMG, I so know this. The triage nurse was asking me questions, I was sitting there writhing in pain crying so badly I could not hear him, and finally I asked, can I please lay on the floor while you ask me these UNECESSARY questions. I can't focus on what you are saying. I have an LP H/A. He got it, and took me to a bed immediately.

Far worse.... FAR, FAR worse. I had bad migraines, and have NEVER experience pain like this, EVER (I would take gall stones over these h/as). I honestly don't think I would go through another LP with the possibility of getting one of these...

I had the blood patch done by anesthesia. They don't do the fluoroscopy. It took them 3 tries. The first time she was rubbing a nerve. She tried to reposition it, but didn't work. Second time, I almost passed out, so they had to stop. Layed down about 5 mins, started again, and it was done in less than 5 mins... I was good and numb by then

Just some comments...medical care in a training hospital or a civilian hospital is no different than a military hospital. Don't get me wrong, I am not downplaying what's happened to you, but you have to look at the big picture. You are one of thousands...and trust me when I tell you that what goes on in military hospitals is no different than what goes on in civilian hospitals. I've worked in both.

Considering the number of patients that the mlitary medical system sees on a daily basis, I don't think that what you have experienced is any different than what a LOT of people experience who deal with the HMO system. And by that I mean non-continuity of care. I will agree with you regarding that comment. That was the one complaint that I had. You'd get used to a doctor and then either we transferred out or the doc would transfer out. Being in the Navy, we moved every two years so getting continuity of care was difficult. It's just one of those things.

As a side note, the local ER tried their very hard to kill me not too long ago when I an acute allergic reaction to Zantac...needless to say I am not too happy with their ER care. In fact, every time I need to go to the ER I refuse to go there...and it's closest to my house.

As for fertility issues, I went through the same thing...clomid. Not fun. I never did get pg...and it was b/c they never tested my DH. And that is standard even in the civilian community. A friend of mine just went through the same thing and they didn't test her DH until after she'd been on clomid for 6 months. They found out it was him and not her.

With this crazy disease, many neurologists will admit that a lot of their patients know more than they do because there is so much information/research out there that they cannot keep up with it.

I am a patient advocate for the NMSS and we've interviewed Neurologists who admit that they know that they cannot keep up with what's going on in the MS community, even the specialists.

They are not supposed to be biased one way or the other about the DMT meds for their patients. It gives the patients the impression that they are being paid by the drug companies to push one drug over the other - ethics. So they hand you the pamphlets or let you know what meds are available and let you make the choice. Unfair...maybe, but it's your body, your choice.

Educate yourself. Knowledge is power. Just keep educating yourself as best you can, that's all you can do. That's what we all do.