Dysautonomia (Autonomic Dysfunction) Community
Spinal Taps and Headaches
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Spinal Taps and Headaches

I am pretty sure I will have a spinal tap during my visit to Mayo in late January and I know of another member of the forum who will also have one that month.  For those of you who have already had this procedure do you have any advice as to how not to have the headache that can follow and or do you have any general comments about it.
I have read about it but I would rather hear of other's real experiences. Marie
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I have not had a spinal tap but have had 3 spinal blocks, and I found the most important factor for me was to ensure I was well hydrated.  I did have headaches after each one and this was the main thing that helped, along with just laying down.  

I have read that intravenous caffeine injection is often quite effective in easing these headaches, but I am unsure how freely available they are.  

I hope all goes well xx
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Be sure you are lying flat afterward to try to prevent the spinal tap headache.  I got one of these taps done one of the numerous occasions I went to Kaiser's ER department.  They were trying to rule out spinal meningitis.  It's been a long time, but I think it felt like a sore muscle feeling afterward, kind of like a tetanus shot?  It's been a number of years.  Why are they planning to do a spinal tap?
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The biggest factor in preventing the headaches is laying flat for the proper amt of time. I had many pts over the yrs who had spinal taps as in patients. Most got a small headache but very few got headaches that were a real problem.
Beema
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When I had mine, I drank lots of water before and after the test.  I also laid down for about 30 mins than sat up slowly for about ten mins before I stood.  While I was laying down, the doctor gave me water with a straw to drink.  I kept real still..even my head.  I didn't get the headache.  Good Luck!  
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Thank you all for your responses!  Hydration and lying still as well as getting up slowly seems to be the main deterrent and that is good to know.
I was asked by the coordinator if I have had one done so I am suspecting they may be planning to do one.  The reason, I can only guess here, would be to determine protein levels and antibody levels in evaluating my neuropathy which may be autoimmune.   Marie
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Recently, one of my parents was evaluated for peripheral neuropathy- I believe likely different in nature than yours (yours is probably autonomic neuropathy?) and the neurologist said they can only figure out what is causing peripheral neuropathy about half the time.  I saw a website that had a higher percentage of where they can figure it out, but still, there are a number of cases where they can't figure it out.  But the doctor ordered the tests of things known to cause it and now they are checking my parent to see if he has cancer!  But a spinal tap was not one of the tests ordered by the neurologist in my parent's case.  
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I hope your father does not have cancer and they can find the cause of his problems.    I have read there are over 100 types of neuropathy.  I really never realized there could be so many  differences.  I had in my mind lumped all together.  I did read that cancer can cause neuropathy. Here is a good link about those types.

http://www.neuropathy.org/site/PageServer?pagename=Type_Cancer

I think like you said they search for any possible cause like diabetes and keep widening the circle so to speak to find the cause.  There are certainly a lot of things that can predispose one to developing neuropathy including diabetes,  vitamin deficiencies, autoimmune diseases, shingles, lymes disease, and cancer.  Mechanical injuries can also lead to it and carpal tunnel comes to mind.  

I am sure doctors who study neuropathies see patterns in the types of symptoms as in if it is axonal or demylinating, if it is one nerve or  more, if it is motor or sensory and if it involves the autonomic system or not.
Mine seems to be axonal and demylinating, involving more then one nerve root, and the autonomic nervous system as well as  motor and sensory.  I am  looking forward to hopefully finally getting more answers soon.  Marie
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I just found an interesting algorithm for neuropathies.  I realize our topic has broadened here but I thought this might be interesting to others. Marie

http://www.neuropathy.org/site/PageServer?pagename=Type_Cancer
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1323747_tn?1364810482
I'm sorry.  I put the same link I put before.  Imeant to put this one.

http://www.aafp.org/afp/980215ap/poncelet.html
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hi mtgardner,

i have had two l.p. and two spinals, just once some headache (not a bad one) , but i think back it was because from c-sect and picking up my babby too early

Your stature can    come to play here,my neuro said he typically has an easier time on lean people since he ccan determinee a good site  for thee puncture.

Ask if you can request to have it done with fluroscopy.
Iif youu can plan to  lay low for a could days. Move slow and easy and no lifting.
good luck and maybe you will not have one  after all.
take care , amo
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1323747_tn?1364810482
I think I read somewhere that having the patient sit in a chair could help with site location if weight is a factor. but most references I have read talk about the curling into the fetal position or laying on your stomach with a pillow under that area.

I can see where Fluoroscopy would definitely be more reliable way for insertion.  Thanks for bringing that up.  As for if they will order this test or not I am like99% sure they will  as it would offer valuable information.

I found this link which gave me a better overview of what to expect.  Maybe it will help others as well.  Marie

http://my.clevelandclinic.org/services/lumbar_puncture_spinal_tap/hic_lumbar_puncture_under_fluoroscopy.aspx
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875426_tn?1325532016
Thanks for trying to help!  The person who read my dad's EMG felt it was an early polyneuropathic process & motor was mentioned and tibial was mentioned.  But in your case, they are looking for disorders of the brain or spinal cord with the spinal tap?  Do they think you might have MS?
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Since I have not talked to anyone there as yet except the co-ordinator I am only guessing here but it is an educated guess from much reading.

My neuropathy is believed to be caused by autoimmune thyroid, Hashimoto's. I have other autoimmunity as well like Raynauds and I suspect a few others not yet identified.    When you start puting pure autonomic failure with autoimmune neuropathy and progressive weakness you have to look at AAN or autoimmune autonomic neuropathy.  It is a syndrome that has features similar to myasthenia gravis.  To diagnose it you do a spinal tap and look for the anitbodies which are similar but not the same as in mysasthenia gravis and you look for protein as well to rule out some things.

I can add a link later once I find it that may clarify this.  There is much to rule out to define the dx. and my hope is I come away with a clearer dx. and guidelines.  Marie
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This is a great overview of autonomic neuropathy.  It does talk about a spinal tap in the differential diagnoses section.  It was another article however that spoke about the antibodies in spinal fluid.  Hope this is helpful to others.  Marie
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Oooooops.  Forgot to add the link.  Well you know now who hasn't had their morning cup  of coffee!  ;)

Here is the link to the overview of autonomic neuropathy.  Marie

http://emedicine.medscape.com/article/1173756-overview
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875426_tn?1325532016

Thanks for answering!  You can drink coffee with your dysautonomia? :0)
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Caffeine is often recommended especially at breakfast for those having postprandial hypotension.  I am one of those whose BP falls with even very small meals.  They often say not to use it later in the day as it may cause sleep disturbances but it usually can be helpful in those with this problem if used in the morning.  I myself use decaf which does have some caffeine mixed with a bit of Ghirardelli and it is my morning wake-up as well.  :)  This combination seems to me to have less acidity as well then real coffee.

If you want to see some articles about this put coffee+hypotension into your favorite search engine. I normally use a search engine called dog pile.  Marie
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Marie, that coffee sounds so good. Is it a special brand or do u add Ghiradelli to it? My Dr recommends a cup of.coffee at meals to.stave off.the postpranial hypotension. I usually have tea as it seems easier on my stomach.
Beema
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875426_tn?1325532016
Never been a coffee drinker myself.  That's interesting that your BP falls with meals.  I don't think I've ever taken my BP in relationship to a meal, but it does sound like a dysautonomic reaction for your BP to fall since your heart works harder after a meal while digestion is taking place.  Does your heart rate go up as well?  I know mine can go up with a larger meal than breakfast, which is why I don't like to walk too much afterward and my head also feels affected at times, which is another reason I don't like to be up for awhile after a large meal sometimes.

  Early morning is one of the times my heart rate goes the fastest when I am in the standing position.  I don't remember for sure, but I think I was told to avoid caffeine with my tachycardia, but if so (besides many years earlier, when I was diagnosed with IBS and told to avoid it), it may have been with the IST diagnosis before the POTS diagnosis.  But I also have to avoid a number of meds, generally, such as benadryl, chlorepheneramine, nubaine, etc., because they increase my heart rate.  It's good you can get a pick me up with de-caff coffee, which has so little caffeine in it!  I used to love cherry coke as a teenager!
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So glad you asked these spinal tap questions.  I chickened out of mine last month.  Whoops.  I figured I will wait till after holidays.  Can't afford to get a headache afterwards along with lying down.  Anyhow, they said to drink caffeine-this is what really helps the to avoid the headache.  Ugh, -my blood pressure goes so high and then drops soooooo low and I go into some type of crisis that is awful.  Wish there was something else to use to help.  My doc also ordered a blood patch just in case the headache occurs and she also ordered a xray guided spinal tap. (blood patch is when they take your blood ahead of time to use in case you get a serious headache-they have to do a procedure like spinal tap and use the blood to stop the leaking of the spine.  I hope I'm repeating this correctly.  I heard it's not fun but stops the headache instantly. )  And she said xray helps them to get a good sample without as much pain.  Gosh wish there was an easier way!!!  Hope all goes well for you!
Tkimber
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So glad you asked these spinal tap questions.  I chickened out of mine last month.  Whoops.  I figured I will wait till after holidays.  Can't afford to get a headache afterwards along with lying down.  Anyhow, they said to drink caffeine-this is what really helps the to avoid the headache.  Ugh, -my blood pressure goes so high and then drops soooooo low and I go into some type of crisis that is awful.  Wish there was something else to use to help.  My doc also ordered a blood patch just in case the headache occurs and she also ordered a xray guided spinal tap. (blood patch is when they take your blood ahead of time to use in case you get a serious headache-they have to do a procedure like spinal tap and use the blood to stop the leaking of the spine.  I hope I'm repeating this correctly.  I heard it's not fun but stops the headache instantly. )  And she said xray helps them to get a good sample without as much pain.  Gosh wish there was an easier way!!!  Hope all goes well for you!
Tkimber
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1323747_tn?1364810482
tktimber...the patch sounds like an excellent precaution....

SurgiMenopause....The problem after meals is blood going to the gut region for digestion thus lowering BP elsewhere....a kind of pooling for digestions sake....I feel it after eating as light headedness...My pulse doesn't come into play as part of the definition of pure autonomic failure is that the heart does not compensate.  I think it is from loss of innervation.  

The only time in the past year my heart rate as gone above 100 was in some extreme circumstances which involved changing doses of thyroid meds so in this area we are apples and pears!  I would think caffein not a good idea in general for anyone with POTS or tachycardias.
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