posted
So I posted on my discussion about not having any major headache from my LP the other day but this morning I am starting to have pretty bad head pain. It isn't the worst headache that I have ever had, like most people will describe a spinal headache like though. But it is getting bad and my light sensitivity is getting worse with it. When I lay down it does get a little better.
As soon as I felt the twinges of pain I had been having earlier, get worse, I started to drink more water and now I pulled out a Dr. Pepper (gross!! But it is the only caffine in the house. I'm allergic to coffee.) Now with the fluids I am starting to feel like I need to vomit.
Could this be a spinal headache?? I just don't know if it is the pressure in my head going up too high again and its just my headache from before coming back or if you can get a spinal headache a day and a half after the LP.
Any advise people?
I am going for a massage today, do you think this is a bad idea or a good one?
I feel as if I may have spoken too soon as far as the whole spinal headache thing....oops! Posts: 265 | From Oregon | Registered: Aug 2009
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posted
I ment to say on my discussion about the Lumbar Puncture. I hope I am clear here...
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
I developed a pretty severe headache 3 days after my LP. I drank lots of coke and returned to my bed, where I spent another entire day laying flat. It was gone the next day.
I was willing to waste as many days as necessary, bored out of my mind and staring at the ceiling, if it was going to save me a spinal headache!
It seemed to work. I'm one of those ppl who gets the 1% chance of every adverse thing happening, and I came away from my LP feeling pretty good!
Posts: 151 | From SW US | Registered: Feb 2009
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Anytime there is a breach in the dura (as in during a LP) there is a risk for a CSF leak.
If you are 2 or 3 days out and now begining to get headaches and eye issues you should contact your doctor.
Possible that you have a small leak and it can be repaired it with a blood patch.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
I had to have a blood patch done because it was obviously a leak: Lay down, pain almost diassapears, sit or stand up and it was back.
Unfortunatly, it was a REALLY bad experience. Much much worse than the actually LP!
It has been 16 hours since the patch and I am still struggling with the headache. When I lay down it goes away but when i am up it comes back, it just not a 9 like I was yesterday morning. Maybe a 5? But I havne't been up much either, it might get worse if I am up longer.
I'm kind of scared that I am going to be that super super rare case where you have to have 2 patches....hopeing that later in the morning I am feeling better.
Thanks for the advise folks!!
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
that really sucks, hope you get answers from this.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You should call friends and family and line up physical / domestic / driving support for the next two weeks - just in case. You may be better in a day or two but, for some, it has taken about two weeks of being flat on their back. Not to scare you but it's important to know this, just in case, and just lie still.
If a good friend can massage your legs and feet, that would be good. Or, with head and torso still, as best you can now and then, do some isometric exercises with your legs and stretch your feet, to keep circulation and some exercise going for those muscles and lymph tissue.
WATER is your friend but you might also enjoy some fresh lemon or lime juice - and a dash of SEA SALT and stevia, a plant based sweetener.
Have someone bring you several varieties of GREEN TEA. That has enough caffeine to help lessen pain but also contains L-Theanine to calm nerve fibers.
Magnesium is also excellent to lessen a severe headache.
Soda (whether regular or diet) will do a lot of damage. It can lead to dehydration, so be sure to hydrate.
Avoid ALL Artificial sweeteners as they can enhance a headache.
If your soda was diet, the aspartame in it can cause terrible headaches (and lots of other neuro problems - but so can other artificial ingredients). If your soda was not diet, the leeching of chemicals from the lining of the can can trigger a headache, as can the chemicals in the soda, itself and the sugar rush and drop.
STEVIA from plants (not splenda, not aspartame) but ONLY STEVIA is okay to sweeten your tea, etc.
SweetLeaf is a good brand. Or Trader Joe's Stevia extract.
I hope you feel better soon. Actually, I hope you can stay off the computer and lie down as much as needed. The light of the computer (but also the way that light flickers) can trigger a headache for you at this point.
Avoid all fluorescent lights, too. Put a lamp in your kitchen. If you have the new low-energy bulbs, don't use those right now but only the regular incandescent ones.
Take care. This will get better but do call your doctor if it does not. Good luck. -
[ 01-22-2011, 02:47 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
The same thing happened to me. I ended up with a blood patch. For some reason an ice pack at the top of my head and another at the back of my skull gave me relief. It was the worst head ache ever. Feel better
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I'm sorry to hear you are feeling badly. The headaches are often the worse part of having an LP.
Feel better soon.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Thanks for all the tips. I actually live with my sister and have had great support the entire time I have been treating. The last 4.5 months I have actually been house/bed bound and she has done everything for me! It is such an amazing blessing!
I am trying to keep it low key here. Sleeping as much as possible, (as always) drinking water and juice. I stopped the soda, it tastes gross and it didn't seem to help. I can't really drink tea. It makes me sick to my stomache.
And speaking of being sick, I am still nauseated everytime I get up. I was so nauseated yesterday at the hospital that they gave me something through my IV for it and it really helped. But I am back at it now. And I am still pretty sensitive to light. However, I deal with that from time to time with all the Lyme stuff. Thankfully I have black-out curtains in my room and only need to leave to use the bathroom.
If you are wondering about me being on the computer, "I am testing the waters". I am supposed to make sure I am not still having a "leaking" headache. Its one thing to just have a headahe for a week or 2 but they don't want you to be leaking for that long. So, I'm up to see how it goes. Not too bad so far, just twinges of the headache.
I'm worried that if I have to go back in for another patch that they are going to end up admitting me. Yesterday they kept delaying my release because I was so sick and I could just see them admitting me for a day or so for observation. I don't know. I just don't even want to think about going back in there. The patch didn't go well and I don't care to ever repeat that experience!!!
Posts: 265 | From Oregon | Registered: Aug 2009
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I am a college student right now in Idaho though. I love Brownsville! I have friends and family there.
I was just in BV a month ago for christmas break.
I had 2 spinal taps AND a blood patch within one weeks time. It is so rare for a second one. Be sure to contact your doc with a lingering headache. They can always give you IV infusions of caffeine.
Just stay laying down. Rest. DONT MOVE AROUND! lol. ( I KNOW FROM EXPERIENCE haha)
Make everyone help you. If you have any questions about it let me know.
Yeah, they RARELY pick up Lyme in the fluids.... Its a waste of time test for LYme, but its good to rule out any other possiblities. What did they all test you for?
I was tested for Meningitis, West Nile, Syphillis, HIV, Fungal infecitions, and tons of other stuff too with it. Only thing that came back positive was Meningitis ;-/
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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What a coincidence!! I love Brownsville. It is so cute! I have only lived here for a little over a year, I am from Ohio.
Wow! Why did you have to have 2 LPs in one week?
Oh yeah, I make everybody do almost everything for me right now. I have NO energy. I walk to the kitchen and I am wiped out. So yeah, my sisters are great about helping me all the time! All I do is lay in bed or half sit up and troll the web....boring life but it is all I can do.
So far I don't really have the spinal headache, just occasional twinges. However I am having eye pain. As long as I look straight ahead it isn't too bad but as soo as I look off to anyother direction, I get the same pain as the spinal headache. Also I am so sensitive to light! Today I was laying in my dark room with my eyes shut when my sister opened the door and I instantly had the same spinal pain just from the light that came in. Its a little weird. But I know I have optic nerve issues so its probably more from that than the LP.
@Lymetoo- Good point! I was just trying to get as much fluid in as possible. Yesterday at the hospital the guy who drew my blood was really worried about how dehydrated I was. (He stabbed, and that word is no exageration!!, 5 times until he was able to get blood. He made me stay longer and get a second bag of fluids, so 2 liters total.
I don't understand why I am so dehydrated though! I have been drinking and the day before the blood patch I had a nutritional IV. So I shouldn't be dehydrated! I'm worried that my body is just draining everything off...is this possible?
Posts: 265 | From Oregon | Registered: Aug 2009
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posted
You will probably need another patch as the first one did not work. I suspect they did not get it in the right area.
You should not have had any problems with the first patch, its and easy procedure and you should have gotten up off the table and been fine from there on out.
Call them back and tell them it did not work. I do think you will need another one.
Posts: 31 | From Wisconsin | Registered: Aug 2010
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posted
Well, yesterday I still had part of a headache, stiff, painful neck, back pain, eye pain, occasionally fever, and was nauseated, so everybody thought I should just go to the ER to make sure that I wasn't developing a meningitis infection or somthing. They ran labs, gave me fluids and meds for nausea and pain. The labs came back normal so they sent me home drugged up with vicodin and a script for more if needed.
By now the drugs they gave me through my IV are gone and I am the Vicodin but it isn't helping my pain much at all.
They didn't seem to be concerned or think that I needed another patch so i guess I will just wait and see what my neuro says at my appt. this Wednesday. I REALLY DON'T want another patch. The one I did have wasn't a good experience and I don't care to repeat it!!
Posts: 265 | From Oregon | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hope you feel better. Before your appt. on Wed. you might want to see the note that LymeAware has over at your Lumbar Puncture thread - regarding experiences with medical care in your area, and in the Oregon, itself:
It was posted today, 1-24, by LymeAware -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You might check with your ND regarding pain relief as Acetaminophen is contraindicated with lyme - it shuts down key functions of the liver detox pathway and that can actually increase pain, then, when glutathione is decreased -- and that's a problem lyme patients ALREADY have.
The other ingredient in vicodin is also hard on the liver. Lyme patients have to be especially careful with any Rx that adds to liver stress.
Any MD who knew anything about lyme patients should know that.
IV magnesium (with other nutrients) should have been offered to reduce pain. It can be very effective and it helps the liver, too.
posted
My LLMD prescribed Norco, which is the same as Vicodin but more hydrocodone. He's a top LLMD. He did regularly test my liver enzymes and recommended Advil over the Norco, but Norco for when I needed it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- but sickntired19 says the Vicodin "isn't helping my pain much at all."
The newer information from Dr. K about how acetaminophen blocks glutathione is something that may be related to the failure of the vicodin to help lessen pain in this case. Glutathione is extremely important in pain management. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by sixgoofykids: My LLMD prescribed Norco, which is the same as Vicodin but more hydrocodone. He's a top LLMD. He did regularly test my liver enzymes and recommended Advil over the Norco, but Norco for when I needed it.
Mine has the 325 acetaminophen.. so is that Norco or Lortab?
Keeb.. I was just objecting to your telling someone it's contraindicated in Lyme when they're in pain. If I'm in pain, I'm taking something for it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
So my sister took script to the pharmacy to get it filled today and when she got home I saw that the instructions say to take 1 or 2 pills every six hours. Here I was taking only one. I tried 2 and am getting more relief. I'm really not too worried because I am only going to be on it for 3 days probably. Unless I am still in pain when I see the neuro and he gets me something else. I doubt that I will get anything else. I can usually just deal with the pain. I don't have a job or go to college. I am already so sick that I just lay in bed all day, so what is a little more pain. I have just learned to deal with it.
I didn't go to the ER because I was in so much pain I couldn't handle it or because I wanted to. I was drug there by family commanded by doctors.
What is the acetaminophen limit supposed to be for a Lymie? And is that different than any other person?
Posts: 265 | From Oregon | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
FOUNDATIONAL PROTOCOL for AUTISTIC SPECTRUM DISORDERS
For Lyme Patients - from Dr. K and www.Thriiive.com Summit and Think Tank
147 pages - September 2009
p. 32 Detox: reducing toxic burden . . .
� Never give Acetaminophen / Tylenol . . . (it reduces glutathione production . . . )
========================
If you take any acetaminophen, you have to have excellent and very specific liver support that will make up for the glutathione drop/block. Your ND should know all about this and be able to advise you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Excerpt: "I was taking Tylenol like I was supposed to, by the label," he said. A few days later the then 37-year-old Benedi was in a coma and in desperate need of a liver transplant. . . ."
Normal acetaminophen dosage can trigger liver failure in alcoholics
==============
That last entry is included with the thought that as excessive alcohol can cause liver damage, so do lyme toxins. So, anyone with excessive toxins - and liver stress from that - mights also be at increased risk for liver damage with even normal doses of acetaminophen (found in Acetaminophen / Tylenol and other OTC products as well as some prescriptions.)
And we all need a liver in working order to help conquer lyme.
Liver stress will also increase pain and inflammation, so it can be a circle. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme patients are at increased risk of liver damage, so we have to have excellent support to prevent or mitigate that: ------------
. . . Lyme hepatitis occurs in approximately 15-20% of patients. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Especially after a spinal tap if there is a headache, of course pain relief measures are important and no one is suggesting that you just suffer.
But acetaminophen is potentially far more dangerous than the general public has been let in on. Even many doctors are in the dark about this. I think we will be learning a lot more about this is the near future.
Still, WITH the right kind of liver support, this may still work for you. Or you may find other pain meds that are not as potentially toxic to the liver.
I know you have a ND but if you want to read from other sources about liver support (and safe pain management) specifically for lyme patients, and then have a conversation with your ND, scroll down to near the end of this thread for articles:
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .
. . . Holistic MDs, and also Doctors of Osteopath (DO) and Doctors of Chiropractic (DC), etc.
�� Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors.
Also included are basic links explaining the principles of herbal medicine. -
[ 01-25-2011, 01:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Sickntired, just wanted to let you know you have been in my thoughts. How are you doing?
If you have the energy and it feels right, I would be curious what happened from the test results.
Hope you are keeping well.
Posts: 232 | From Oregon | Registered: May 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, I have also been wondering how you are doing and if the test results are back.
Hope you are feeling better and that a good working plan has been offered to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hey guys, I'm still alive. Having computer problems, not feeling well...you know how life is.
I will post a new discussion on how the neuro visit went and what the results were, etc. Sorry, I don't have the brain power for it right now, maybe later today, I'll see.
Posts: 265 | From Oregon | Registered: Aug 2009
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