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has anyone ever heard of Spontaneous Intracranial Hypotentsion???
Hey Chiari family,
I was wondering if anyone has ever heard of or has ever been diagnosed with Spontaneous Intracranial hypotension??? The reason I ask is......... The NL that is a self proclaimed "headache spec" wanted me to start gabepentin (work up to 600mgs 3 times a day) STOP ALL CAFFEINE and take sumevel dosepro and indomethecin for headache.. So, I tried one of those sumevel dosepro's, yeah I don't think i will try another one.. First off It made me feel like I was being crushed, it was terrible and it actually made my head hurt worse and then I was OUT for 4 hrs and woke up with just as terrible as a headache as I had from when I went to sleep.... SO thats a NO GO (just another med for "migraines" that I have now tried that did not work) so I haven't really noticed anything to terribly different with the gabepentin and the indomethecin simply does not work for you headache(s)... So since I have stopped all other meds, per his request, and started taking the ones he prescribed me and stopped caffeine, my head progressively got worse each day.... So without even thinking once I got out of bed with a terrible headache and needing to take my morning meds (for non chiari or headache related issues), I grabbed a can of soda and after I had drank almost all of it I remembered that I wasn't supposed to drink caffeine and had noticed that my head didn't hurt as bad anymore.... I didn't have any pain meds yet of any sorts because I can't take them with my morning meds...
So some of you may be thinking "oh she is/was just going through caffeine withdrawl" and thats okay for anyone to think.. My own family says so, like I drink 5 energy drinks a day for the last 3 years of my life.. HEHEHEHE anyways I did some research on caffeine addiction and caffeine withdrawl ect. and I found that it is a controversial subject... Some believe that it is addictive and others do not, and some think if you only have one cup of coffee or one can of soda a day that you are ADDICTED to caffeine and others say that you would be considered a light user if you consumed less than 200mgs a day and a moderate user if you consumed 200-400 mgs a day and a heavy user if you consumed more that 600mgs a day, everyday, for a long period of time... Now Dr Pepper, which is my soda of choice, only has 36 mgs of Caffeine and I will sometimes not drink any and sometime I will have one or two and sometimes 3 cans of soda but not very often.. Its more like 1-2 cans a day.. SO that puts me at an average of 72mgs of caffeine a day... I personally don't think that I personally am addicted to caffeine cause if I was, wouldn't the headache have gotten really bad right away instead of gradually getting worse over the course of 7 days? Like, smokers, nicotine is completely out of the system in 72hrs and thats for a heavy smoker, so in three days, your body is no longer going through withdrawls from nicotine but you are mentally having withdrawls because you have not yet found anything to do with that time that you normally smoked... (I know this because I used to smoke, the first 3 days were tough but after that it was the mental game) oh and I quit cold turkey.... SO caffeine is completely out of ones system in about 12 hours.. The mayo clinics has a good short couple of paragraphs about caffeine and how certain amounts may affect you...
Okay so I seemed to have got off on another tangent here.. lol So I did MORE research about caffeine and headaches and the diagnoses that the NL gave me "chronic migraine" and "new daily persistent headache" and I found this information about spontaneous intracranial hypotension.... and as I read I thought "hmmmmmmmmm this sounds like it could be me" considering I had read that they think its the reason for "new daily persistent headache" and that some people with this have even undergone decompression surgery for Chiari.... I mean as in ANY condition not everyone will have all of the symptoms.. So, I have never had an LP and I have never had a CINE MRI, and I DO know that my Dura does NOT close as fast as most because when I had the epideral taken out after I had each kid, if they didn't hold firm over where they took it our for atleast a couple of minutes it would leak from my back, and when I was I had surgery to repair the leak i had and when they took out the drain they had in me because of the meningitis, they held pressure on if for about 30 seconds and the doctor no more than walked out of the room and I felt my CSF drain out of me and they had a terrible time getting it to stop.. Thank the Lord for the wonderful dedicated nurse who help pressure on it for 30mins!!!
So, now that I have typed a book which I am sorry for, I want to mention this to the NL BUT I am afraid if I tell him about the soda, he will just say "ur having caffeine withdrawls" I would say "********, how come I don't go through them on the days I don't have a soda" But, if this were the problem, it would be a fairly simple fix, just a blood patch or a couple and if that didn't work fibrin glue or something.. Anyways, spontaneous intracranial hypotension is just a CSF leak in an unknown location for an unknown reason... They have tests to determine if this is the problem or not, starting with the opening pressure during and LP and testing it.... Though a low pressure doesn't always mean this, it gives them a reason to further investigate it!!
What do you guys think>>>>>>>>>
once again sorry for the book!
thank you for taking the time to read this and all feedback is appreciated!
I was wondering if anyone has ever heard of or has ever been diagnosed with Spontaneous Intracranial hypotension??? The reason I ask is......... The NL that is a self proclaimed "headache spec" wanted me to start gabepentin (work up to 600mgs 3 times a day) STOP ALL CAFFEINE and take sumevel dosepro and indomethecin for headache.. So, I tried one of those sumevel dosepro's, yeah I don't think i will try another one.. First off It made me feel like I was being crushed, it was terrible and it actually made my head hurt worse and then I was OUT for 4 hrs and woke up with just as terrible as a headache as I had from when I went to sleep.... SO thats a NO GO (just another med for "migraines" that I have now tried that did not work) so I haven't really noticed anything to terribly different with the gabepentin and the indomethecin simply does not work for you headache(s)... So since I have stopped all other meds, per his request, and started taking the ones he prescribed me and stopped caffeine, my head progressively got worse each day.... So without even thinking once I got out of bed with a terrible headache and needing to take my morning meds (for non chiari or headache related issues), I grabbed a can of soda and after I had drank almost all of it I remembered that I wasn't supposed to drink caffeine and had noticed that my head didn't hurt as bad anymore.... I didn't have any pain meds yet of any sorts because I can't take them with my morning meds...
So some of you may be thinking "oh she is/was just going through caffeine withdrawl" and thats okay for anyone to think.. My own family says so, like I drink 5 energy drinks a day for the last 3 years of my life.. HEHEHEHE anyways I did some research on caffeine addiction and caffeine withdrawl ect. and I found that it is a controversial subject... Some believe that it is addictive and others do not, and some think if you only have one cup of coffee or one can of soda a day that you are ADDICTED to caffeine and others say that you would be considered a light user if you consumed less than 200mgs a day and a moderate user if you consumed 200-400 mgs a day and a heavy user if you consumed more that 600mgs a day, everyday, for a long period of time... Now Dr Pepper, which is my soda of choice, only has 36 mgs of Caffeine and I will sometimes not drink any and sometime I will have one or two and sometimes 3 cans of soda but not very often.. Its more like 1-2 cans a day.. SO that puts me at an average of 72mgs of caffeine a day... I personally don't think that I personally am addicted to caffeine cause if I was, wouldn't the headache have gotten really bad right away instead of gradually getting worse over the course of 7 days? Like, smokers, nicotine is completely out of the system in 72hrs and thats for a heavy smoker, so in three days, your body is no longer going through withdrawls from nicotine but you are mentally having withdrawls because you have not yet found anything to do with that time that you normally smoked... (I know this because I used to smoke, the first 3 days were tough but after that it was the mental game) oh and I quit cold turkey.... SO caffeine is completely out of ones system in about 12 hours.. The mayo clinics has a good short couple of paragraphs about caffeine and how certain amounts may affect you...
Okay so I seemed to have got off on another tangent here.. lol So I did MORE research about caffeine and headaches and the diagnoses that the NL gave me "chronic migraine" and "new daily persistent headache" and I found this information about spontaneous intracranial hypotension.... and as I read I thought "hmmmmmmmmm this sounds like it could be me" considering I had read that they think its the reason for "new daily persistent headache" and that some people with this have even undergone decompression surgery for Chiari.... I mean as in ANY condition not everyone will have all of the symptoms.. So, I have never had an LP and I have never had a CINE MRI, and I DO know that my Dura does NOT close as fast as most because when I had the epideral taken out after I had each kid, if they didn't hold firm over where they took it our for atleast a couple of minutes it would leak from my back, and when I was I had surgery to repair the leak i had and when they took out the drain they had in me because of the meningitis, they held pressure on if for about 30 seconds and the doctor no more than walked out of the room and I felt my CSF drain out of me and they had a terrible time getting it to stop.. Thank the Lord for the wonderful dedicated nurse who help pressure on it for 30mins!!!
So, now that I have typed a book which I am sorry for, I want to mention this to the NL BUT I am afraid if I tell him about the soda, he will just say "ur having caffeine withdrawls" I would say "********, how come I don't go through them on the days I don't have a soda" But, if this were the problem, it would be a fairly simple fix, just a blood patch or a couple and if that didn't work fibrin glue or something.. Anyways, spontaneous intracranial hypotension is just a CSF leak in an unknown location for an unknown reason... They have tests to determine if this is the problem or not, starting with the opening pressure during and LP and testing it.... Though a low pressure doesn't always mean this, it gives them a reason to further investigate it!!
What do you guys think>>>>>>>>>
once again sorry for the book!
thank you for taking the time to read this and all feedback is appreciated!
I know where you are coming from!
I have been on 100's probably of prophylactic meds ie Imitrex, Zomig, Topamax ect plus a long list of anti-depressants and NONE of them work for MY h/a. The one med that works the best is Nubain and I have also used Stadol but it's been taken off the market due to litigations.
I am so tired of being made feel that I am going crazy or that I am a drug addict.
Another thing that gets me is I have seen dozens of Dr's for my reoccurring h/a that are getting worse as time passes and ONLY 2 have EVER asked to check my scar from my Chiari surgery. One of them is the one that thinks scar tissue may be the culprit and what's sad is that he is only a Family Nurse Pract. and seems more interested and concerned than any dr I have seen.
IT'S DRIVING ME INSANE!!!
I have been on 100's probably of prophylactic meds ie Imitrex, Zomig, Topamax ect plus a long list of anti-depressants and NONE of them work for MY h/a. The one med that works the best is Nubain and I have also used Stadol but it's been taken off the market due to litigations.
I am so tired of being made feel that I am going crazy or that I am a drug addict.
Another thing that gets me is I have seen dozens of Dr's for my reoccurring h/a that are getting worse as time passes and ONLY 2 have EVER asked to check my scar from my Chiari surgery. One of them is the one that thinks scar tissue may be the culprit and what's sad is that he is only a Family Nurse Pract. and seems more interested and concerned than any dr I have seen.
IT'S DRIVING ME INSANE!!!
COMMUNITY LEADER
Usually the size of the herniation of the cerebral tonsils is not the issue, but rather if they r creating a CSF obstruction is more the issue.
It is good to know ur eyes r ok.....and I wish I knew what it could be since it was not ur eyes or POTS....
I do know u can have a very slow leak and not get the typical HA, so that can not be ruled out bcuz u do not have the typical symptoms....they should check u completely.
I do not have the increase in heart rate as described in POTS. These episodes are not painful, no headaches. It starts about 4min after I stand up I feel lots of pressure in my eyes and I see black circles in my vision and everything is really vivid looking almost too bright. Sound is affected too not ringing but a whooshing sound, the sound is distorted and fluctuates. Sometimes I feel a lot of pressure at the back of my neck and it is hard to move my head to the left or right. I finally broke down and went to the eye dr b/c I was worried I was damaging my eyes but he says so far no problems...$300 later. But a little piece of mind goes a long way. Any idea what that may be? My NL said that if I was getting another leak it should present itself in the same manner as the last ie headaches? The episodes are becoming more frequent several a day. I asked him how many mm my Chiari was and he said he did not measure is that something I should find out. Is this just side effects of the Chiari, common symptoms? Thanks for the info!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
SIH is rare, more so then chiari, and developing chiari as a result is also not uncommon....
Ne leak of SCF will be the worse HA and pain u can imagine, I know I had one....no fun at all....but not to belittle chiari pain and symptoms they r no walk in the park either.
The thing that comes to mind when u said u get the pressure when u stand is the condition of POTS......so do look into it, the other possibility could be u have yet another CSF leak....it may be smaller then the last one....
AS for caffeine as a cure..not likely, it may help with the symptoms, but most deff not a cure.
I had spontaneous intracranial hypotension, which caused a blood clot in my brain and acquired chiari syndrome. I got a huge amount of blood in my blood patch which left me in excrutiating pain for over a week. But I am now better, mostly. Recently I have been getting these spouts of pressure 15 sec after standing that last no more than 5 min. With the intense pressure is changes in hearing and black spots in my vision. My NL was no idea what this might be, I wonder if it is my CSF getting blocked? I am not really pursuing medical attention as these symptoms are just annoying but not painful, unlike SIH. If you had SIH you would know it is extremely painful and debilitating. As far as caffeine, soda in general is not healthy at all, I love my coffee in the morning and could not function with out it . I was told that caffeine could cure SIH but I am inclined to think that is not true. At least not in my case, as I had a big leak.
COMMUNITY LEADER
A lie of omission bcuz u forgot is not a lie....lol....
and a decade ago...do u have the report?....can u get one...I got hold of an old one for me and found I had tethered cord, I was never told!
As for the EDS- do look at the EDS group here, I posted links to videos by a Dr that also has EDS, they r quite informative.
http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc
Y would she not want u to know the cause of the pain and to just use a bandaid?...that makes no sense...I am not advocating surgery as it is not always the answer either, but know what is the root cause of the pain...goodness sake.
It's kinda funny that you would say that..... About reporting pain in my lower back and pain in my thoracic area... I have and I complain about it ALL the time, when I go to the doctors.. They always discount it.... I'm actually thinking of suggesting to my PCP that I get a breast reduction it hopes to alleviate the upper back pain and spasms I am having.. And I lied earlier, not purposely though, just totally forgot about the lumbar MRI I had almost 10 years ago that diagnosed a herniated disc at L5-L6.. So I guess I have had one... Just a decade ago.. hehehehe
I should read a little more about EDS however, I can educate myself all I want about it, and no one here will listen.. My PCP, she's totally adamant that I need to stop searching for a cause and just learn to deal with the pain either through meds, acupuncture, biofeedback ect... She has sternly told me MORE than once that I was to have NO MORE surgeries.. Boy is she gonna be PO'd when I have a partial hysterectomy! lol But, she doesn't have to deal with the pain I do, so I will still prob do what I want.. I just hope it doesn't affect our relationship....
I should read a little more about EDS however, I can educate myself all I want about it, and no one here will listen.. My PCP, she's totally adamant that I need to stop searching for a cause and just learn to deal with the pain either through meds, acupuncture, biofeedback ect... She has sternly told me MORE than once that I was to have NO MORE surgeries.. Boy is she gonna be PO'd when I have a partial hysterectomy! lol But, she doesn't have to deal with the pain I do, so I will still prob do what I want.. I just hope it doesn't affect our relationship....
COMMUNITY LEADER
Just wish I could do more, and please keep in mind, hypermobility is only one aspect of EDS and not everyone with it has it or has it to the point that can recognize it....when I was first suggested I may have it I flat out said no...that is not me....but, it is.....so, do not discount it until u r checked for it by a Dr that knows it.....
Mayb u need to report pain lower in ur back to get the MRI approved by ur ins.....like it is a diff issue????
Don't be sorry! I really appreciate all of your help.. and NO I have NEVER had a lumbar or thoracic MRI, My insurance wouldn't approve them.. SO I didn't get them because I can't afford to pay out of pocket for them..
Anyways, I don't have hypERmobility its more like hyPOmobility, LOL So I'm not sure that EDS is any of this.. I certainly don't know much about it, I just know that most folks have the hypermobility.
Lastly, I have been keeping on the NL about all of this because how he is treating me is not making anything better.. SO I am going to be getting "trigger point" injections on 19th and also I bought a groupon for acupunture in my local area.. So im gonna give that a go....
Thank you again Selma YOU ARE GREAT!
Anyways, I don't have hypERmobility its more like hyPOmobility, LOL So I'm not sure that EDS is any of this.. I certainly don't know much about it, I just know that most folks have the hypermobility.
Lastly, I have been keeping on the NL about all of this because how he is treating me is not making anything better.. SO I am going to be getting "trigger point" injections on 19th and also I bought a groupon for acupunture in my local area.. So im gonna give that a go....
Thank you again Selma YOU ARE GREAT!
COMMUNITY LEADER
SO it is not a collection of fluid, that is good....
There is another issue I was considering but, I feel it would have shown up in the MRI....
The only other issues I can think of at this point is tethered cord, did u have a lumbar MRI to rule this out?....a syrinx, did u have MRI's of the thoracic and lumbar in addition to the cervical MRI to rule these out?
The MRI's would also indicate ne other disk issues....
Last, Ehlers-Danlos as it can cause HA's...and all over pain......
PTC- which I think again it would have shown as a fluid build up, but many times they need to do a LP to figure this out....as well as a slow leak....
Sorry, I wish I was better able to help
I have had a post op MRI and I will type what it says..
" FINDINGS: Decompression has been performed for chiari malformation. Posterior arch of C1 remains visible. There is susceptibility artifact within the posterior musculature of the upper neck. The cerebellar tonsils assume a somewhat pointed, pegged configuration. There is slight crowding of the cervicomedullary junction. There is no syrinx present. There is no pseudomenigocele. Forth ventricle does not look to be compressed.
cervical alignment is anotomic. there is slight annular bulging of the C5-C6 disc. There is no central or foraminal stenosis. Facets are normally aligned and maintained. There is no neoplastic infiltration of marrow.
Upper half of the posterior arch of C1 has been resected as has the lower margin of the occipital bone. The space of the cervicomedullary junction is slightly improved.
IMPRESSION:
1. Prior decompression for chiari malformation. Posterior C1 remains visible in place.
2. No psuedomenigocele or other fluid collection
3. Cerebellar tonsils exhibit slightly pegged configuration."
The local NS told me everything looks good.. So I dunno, I don't know to read these things half the time.. I think it has quite a bit of info to mean that everything is 'GOOD"
" FINDINGS: Decompression has been performed for chiari malformation. Posterior arch of C1 remains visible. There is susceptibility artifact within the posterior musculature of the upper neck. The cerebellar tonsils assume a somewhat pointed, pegged configuration. There is slight crowding of the cervicomedullary junction. There is no syrinx present. There is no pseudomenigocele. Forth ventricle does not look to be compressed.
cervical alignment is anotomic. there is slight annular bulging of the C5-C6 disc. There is no central or foraminal stenosis. Facets are normally aligned and maintained. There is no neoplastic infiltration of marrow.
Upper half of the posterior arch of C1 has been resected as has the lower margin of the occipital bone. The space of the cervicomedullary junction is slightly improved.
IMPRESSION:
1. Prior decompression for chiari malformation. Posterior C1 remains visible in place.
2. No psuedomenigocele or other fluid collection
3. Cerebellar tonsils exhibit slightly pegged configuration."
The local NS told me everything looks good.. So I dunno, I don't know to read these things half the time.. I think it has quite a bit of info to mean that everything is 'GOOD"
COMMUNITY LEADER
Not to plant seeds of other possibilities, but post op there r conditions those that are in the range of 3 to 6 months post op that experience .....
ICP...can develop......a CSF leak can also form...and a blood patch does not always do the trick.
Sometimes it is rejection of the dura patch used.
Others have developed seizures, epilepsy....
Have u had a post op MRI?
I am seeing a NL right now but the only dx he is willing to give me at this point is "chronic migraine" and/or "new daily persistent headache" I have my doubts that he will be willing to investigate further what is going on with me, he seems pretty convinced just like all other that its just migraine... And my thoughts on that are "well if it is Migraine then why don't ANY of the migraine meds help and some actually make it worse"
So I fully intend on asking him about this the next time I see him.. I don't want to do it over the phone because I want to have the literature with me so when he shoots me down I can show him some case studies...
I just wanted to find out if anyone in the chiari community had ever been told this might be the problem or even diagnosed with it,,, The studies that I have read said 3 people underwent PFD for chiari when all along it was just a leak somewhere pulling down on the tonsils..
So this is probably just wishful thinking really, cause I'm desperate to NOT have a headache and if this was the problem, a simple blood patch could possibly fix it..
So I fully intend on asking him about this the next time I see him.. I don't want to do it over the phone because I want to have the literature with me so when he shoots me down I can show him some case studies...
I just wanted to find out if anyone in the chiari community had ever been told this might be the problem or even diagnosed with it,,, The studies that I have read said 3 people underwent PFD for chiari when all along it was just a leak somewhere pulling down on the tonsils..
So this is probably just wishful thinking really, cause I'm desperate to NOT have a headache and if this was the problem, a simple blood patch could possibly fix it..
COMMUNITY LEADER
Well now it all makes sense to me....yeah u need to see someone like Dr H for sure....can u appeal to ur ins to cover this as the one that participates did not help u.
And a NS can not help u, unless u need surgery and go to them with a dx...they treat, they do not figure out what is going on a NL does that....do u have one in ur area that can do testing to show what all is going on so u can get to a NS and get the help u need?
I have had decompression and it was 10-17-11, I know that was only 4 months ago but things have gotten worse, not better since then... I did have chiari specialist but I choose not to see him anymore because of everything I had to go through because of him.. He was rude to me when i ended up getting meningitis because of a hole he left in my dura and even after it was confirmed I had meningitis he still was a jerk and said he never in 17 years ever had anyone have meningitis before which was a lie! So, I have chosen not to see him for those reasons, and I did see a NS locally but he just isn't that interested in anything about me and when I asked him why some things were worse mainly my headache, he said "I don't cure headaches, Im a surgeon" so I just don't think he is a good doctor for me.. So I have ppl I can go to, I just choose not to because of how I have been treated. I would really like to see Dr Henderson in MD but he doesn't participate with any insurances and my out of network benefits are crappy..
COMMUNITY LEADER
Hi...yes, I have heard of this...it is the result of a CSF leak...sometimes a very slow leak.
Caffeine aside, did u have the chiari surgery if so, how long ago was ur PFD surgery?
Do u have a Chiari specialist?...
Thanks zygy!!! I have been made to feel like a idiot plenty of times from doctors, lol I just don't want this new doc to feel that way towards me... hhehehehehhe
Good luck! Just remember that most of us have felt like fools at some point and some for a very long time. We just have to suck up that feeling and try to keep moving forward or we will never find answers. It is a horrible feeling but when you find the right person to listen and get real answers it will make it all worth it.
Thank you for your replies! I appreciate them. I think I will just put a call out to the NL today and see what he thinks.. I just don't want to be made to feel like a fool though... So, I guess we will see..
Thanks again
Thanks again
Addiction can be complex and effects everyone differently, it is not just about the amount, but the way your brain and body reacts to the substance you use.
I find caffeine helps with my HA.
Sorry I don't know much about Spontaneous IH but I would imagine that any obstruction or leak of CSF will change the CSF pressure.
I find caffeine helps with my HA.
Sorry I don't know much about Spontaneous IH but I would imagine that any obstruction or leak of CSF will change the CSF pressure.
Well, I don't know much about this "Spontaneous Intracranial hypo tension", however, I do know that caffeine can help with migraines. The pain experienced from migraines can often be caused from the dilation of blood vessels in the head. Caffeine is a vaso-constrictor and will thus help with the migraine by effecting the blood vessels. In your case, your blood pressure is too low (hypo tension) and constricting the blood vessels helps increase the pressure.
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