Hi All, Some good news on my end

[anolan]

Hey guys,

Just thought I'd give everyone some good news. I found a new neuro dr and she is awesome. She listened to everything I had to say and didn't pat me on the hand and say well you don't seem that bad. She agreed that I still have a really small leak, but said that the anxiety was probably making my symptoms feel worse. I have been reluctant to take anything for anxiety because I just feel like less pills are better than more pills. I also read to much stuff on the net. She gave me Amitrip said take it at night for a week and then add Lexipro. Well I've been taking Amitrip and my anxiety it totally gone. I really do feel better. I may not even take the Lexipro. I'm still have positional dizzyness and numbness and the ear stuff but the day to day feeling terrible all the time is gone. She said that she is not opposed to one more blood patch, unlike the other dr who just brushed me off. So I'm feeling much better about my chances of healing which can't be a bad thing. Thanks for being there everyone and I'll keep on updating. Amore and Slobbers to all

[LauraL840]

*mm1*mm2*mm1*mm2

Congrats on the new Doc and the latest results!

Don't you feel 'bad' for a second about adding medication to help with the health issues that surround your leak! My husband is the leaker and I was the one to get anxiety and need to be on medication! :eek:

Glad it's helping!

[guineapig]

hi anolan, i've just pasted parts from a number of your posting and responded:

“In 2005, 7 months after the birth of my first baby I was helping my husband move some free weights
About 20 minutes later I got what I thought was a terrible migraine.
I was vomiting and could barely sit up.”

“Oddly enough my husband and I were moving a set of free weights into the house. I was sitting on a step in the study and he was handing them to me thru an open window. I was just grabbing and tossing them into the house.”

hmmmm, if i may try to analyze your leak causing scenario… keep in mind i have 3 neurons left, am currently under the wonderful influence of percocet not to mention the other drugs…

1) you were doing an activity whilst upright. that means (per the average) the pressure at the top of your cranium was about negative 220mm and the pressure in your lumbroscral sac was about a positive 440mm pressure; this due to gravity.

2) you were lifting i guess to be heavy weights of a particular concentrated shape which facilitated an easy movement of your torso to spin or pivot around from accepting the weights from your husband to delivering it somewhere else whilst in your seated position. twist in the spine, particularly neck increases csf pressure.

3) if the weights were above your strain average, you were more likely to be holding your breath albeit for an approximate duration of receiving the weight at the least to possible until dropping it, but long enough to furthermore put additional increase upon your csf pressure via your thorax.

4) if you were doing this activity long enough, your blood pressure was up, which increases csf pressure.

5) you were in a seated position which means you did not have your legs to better counter balance your torso which they would have had you been standing, so you used your ab muscles even more so during the transfer of weights. this put additional strain on increased csf pressure.

6) if you were twisting during the exertion, you were stretching the meninges which means they were less flexible in accommodating increases (particularly sudden ones) in csf pressure.

add these factors up geometrically, and probably with others i have not mentioned, it was sufficient enough to cause the weakest point to blow. if you had a genetic defect along your spinal meninges, that would be the guess; but not necessarily the place though. an easy guess would be the lumbar area because there lays the greatest pressure location, particularly in the sleeves tapering around the exiting nerves in the lumbar area.

“I'm on a low dose anxiety med, but I usually just get anxious at night.
I know just how you feel being anxious. For me it's worse at night. Heart pounding, feeling "hopped up".”

not to discount your own assessment of your body, but consider it might be that you are not just getting anxious at night when you have the unconscious and conscious expectation of relaxing and eventually sleep. you describe your previously very physically active self. your body prior to the ravages of a chronic csf leak was able to turn down tenseness, blood pressure and the psychological parameters of your typical day. the affects of a intracranial hypotension, read more like, a brain that is physically disabled by low csf, low volume, low pressure (do you know how important these things are to normal function? now you do.) have decreased your previous natural, without a thought abilities to tone down from a day full of activities. “you” can’t handle it; but during the day when you are busy, 1) you are distracted or at least partially so from anxiety and 2) you are not trying to relax or go to sleep; the latter being more important. that part of your brain which turns things down then off in order to go to sleep is damaged. so, yah learn new techniques to relax and get to sleep. for me i found that control of thoughts, vicious cycles of repeated useless thinking which maintained anxiety and added to the difficulty of turning off to sleep; in fact since i was trying to relax, trying to fall asleep they even heightened anxiety. and, i learned a counting/breathing technique which helped as well (count slowly 1 to 10 with the number “counted” on the exhale; and breath with your stomach rather than chest to draw breath). both of these significantly helped replace that taken for granted (as it should be), well working mechanism that enabled me to so easily go to sleep despite coffee or soda or exercise or a very busy day.



“said that the anxiety was probably making my symptoms feel worse.”

YES!!! anxiety is a multiplier of pains of tinnitus, of tingling, of almost whatever you have to increase suffering. one may for example have a 1 on the international headache scale (0 to 4) but by suffering (which very often is caused by anxiety) it is worse than a 2.

“I take alot of hot baths, get massages and talk to friends and my hubby. Sounds hokey I know but I seems to help. Everyone is different.”

your technique is absolutely not hokey. you are right on spot, perfect both by what you do and that you recognize that every leaker (to use my words for your meaning) is different. the rules of chronic leaking: one must put effort into discovering the puzzle which is both the particular nature of one’s own leak and the unique treatment required which includes treating the leak, the symptoms, the suffering, the anxiety.

“Since I was pregnant he said they would have to wait for any treatment until after the baby. I had my first blood patch July 2006. My headache was gone, but I immediately start have other weird stuff. When I stand up I get really dizzy, my ears make a whooshing noise and my arms get tingly.”

curious, what is the understanding that a blood patch must wait till after delivery? granted there are some drugs during the patch, sedatives for example, but my guess is that that is insufficient a reason to delay a badly needed improvement in quality of life.

the affects of the blood patch, the dizziness, is vertigo. my vertigo also only kicked in after blood patches. there was none despite zero pressure before patches. none after the first 22 cc lumbar patch; which helped not the ha. a little vertigo (slight dizzy sensation whilst walking) after 2nd patch of about 60 cc. and then it really kicked in after the 3rd patch of about 55cc; which also gave the best improvement of ha to the point that it was gone a good amount of time. i posited to wouter schievink that the vertigo was my brain getting use to higher (more correct) pressure; a sign of improvement. he concurred that was a good guess.

now i had tinnitus from the csf leak and before any blood patches. the blood patches made the tinnitus worse. i hypothesis that the sudden increase in cranial csf pressure does more damage to the inner ear which is only two membranes away (one being the meninges) from csf. also i didn’t have ear pain or that clicking (not tmjs) in the ears until after the blood patches. but opposite of you, i had hypersensitive hearing; unlike your hearing loss. but this as i recall was before patching.


“But it really affects my mental clarity and how i function. I really just don't feel like me anymore. I have a new neuro dr who basically just said doesn't sound like a leak here is some valium for the vertigo. I'm wondering if anyone has had successful treatment for the other symptoms. Will they just go away one day? I'm looking for a neuro dr who takes this seriously because I sure do.”


affects mental clarity ehh. i just burned dinner, again! never did that before the leak. i use to cut myself by mistake after the leak as well; which was new after all those years of working in surgery and cooking.

valium for vertigo. hmmm, i am not familiar enough with valium. but anyway, i utterly successfully used diamox for the vertigo. it took it away 100%. keep in mind that diamox reduces csf production; which would be contraindicated in our position.
so if you try it, weigh the benefit vs the evils. in affect it would increase or produce hypotension, which is the cause of our problems as opposed to just a leak which generally speaking can be in itself harmless.

yes, looking for a doctor which takes your other quality of life symptoms seriously. that is difficult. it can be very difficult to find an internist who will even take the headache seriously. i have had very bad experience with all the neurologists re the csf leak and its progeny. i do much better being my own doctor. now if i could just write my own prescriptions.


“How do I find out from a dr if they have experience without going in and having my time wasted again?”

this is so difficult. i have decided that the experience in treating patients w/ csf leak is not what i look for in the doctor, because i know it is too difficult even in LA to find them. and with all due humility, of the 40 or so doctors i have been to in the last few years, sad to say that i am more knowledgeable, have more understanding than all but maybe one and in a number of things even him re csf leaks. i look for a flexible doctor who is willing to listen, is not pompous w/ a god complex, and take my word for what i am suffering and is willing to take my suggestions and do something about them.

“I've had some improvement in mental clarity but everything else is about the same. I feel just certain I'm still leaking a little or maybe I can't regulate csf anymore.”

good guess on the “maybe i can’t regulate the csf anymore.” it use to be thought that intracranial hypotension was caused by a reduction in csf production. that theory was replaced by csf leak. rightly so for the most part. but one would wonder if the choroid plexus, which creates most of the csf, located in the middle of the brain might be damaged. just think. if you go long enough without hydration, you suffer organ damage then failure. but say one went long enough dehydrated to cause damage that at least some did not recover from regular return to hydration.
also, the choroid plexus needs a biofeedback mechanism which tells it to produce more or less csf. it makes it over 3x a day. the general understanding is that it does make more in the presence of a leak. something tells it to crank out more. remember it is in the middle of the brain and most of the csf circulates around the outer brain and the spinal cord. i am guessing that it is the arachnoid villi, located at the top of the cranium and the base of the spine, which in addition to absorbing csf also gives feedback to the choroid plexus to make more or less csf. it acts as a volume/pressure gauge. think, an engineer would place measuring tools at the extreme ends which is both the top of the cranium and the base of the spine where that which is to be measured is located. i think God would do the same. so my point is. maybe the arachnoid villi are damaged. are they absorbing correctly: too much, too little. if they do, are they measuring correctly? at all?


“I actually think toward the end of my pregnancy that the ha was less maybe pressure on the leak decreased the leak.”


the fetus and extra weight around it puts pressure upon your diaphragm which thru the various mechanisms directs pressure to your cranium which is an increase in csf pressure which reduces hypotension which in turn reduces the headache.

“I've had two patches, I don't have ha anymore now I have positional vertigo, thumping in my ears and hand tingling when I stand up.”


you had pondered if you should get another blood patch. any doctor will strongly consider the absence of a headache to proceed with anther patch. as i discussed with wouter schievink, the ha is the predominant indicator to get a(nother) epidural blood patch; which is to say, it suggests that one is still leaking.

when you stand up you create a difference in the arrangement of csf in your head. and the postural change itself moves the csf around in the cranium. i use to get slot machine vision whilst lying down, when i turned my head to the side: my vision (my wife said my eyes were not moving) or i should say the picture of what i saw looked exactly like the revolving slot machine or even more accurate a very fast rain bird. as i mentioned, the diamox completely took care of this.

“Well I've been taking Amitrip and my anxiety it totally gone. I really do feel better. I may not even take the Lexipro. I'm still have positional dizzyness and numbness and the ear stuff but the day to day feeling terrible all the time is gone.”


it makes me glad that you decided to use, shall i say another drug. it is a tool. used correctly it is as appropriate as not using it is inappropriate. that goes for any drug for anyone in most any health situation. i was put on elavil (amitryptiline) prior to official diagnosis and correct treatment as a mechanism to stop the headache. it did nothing for the ha and even made my tinnitus worse, even at a low dose. see side effects below, tinnitus being one of those of amitryptiline.

well, i’m not gonna bother to read this book for editorial correctness. i’m past my limit.
guineapig


http://en.wikipedia.org/wiki/Amitryptiline
Side effects
Common side effects of using amitriptyline are dry mouth, extreme weight gain, drowsiness, nervousness, dizziness, blurred vision and insomnia. Some rare side effects include tinnitus, hypotension, mania, psychosis, anticholinergic effects, heart block, arrhythmias, extrapyramidal symptoms, depression, and hepatic toxicity.

[cacoelho]

Hey Anolan
I take the Amitrip-stuff too and it works great. Not only does it help with anxiety but with chronic pain too.

[anolan]

hey guinea pig

Wow, you totally rock. I think you have put more effort into thinking about my condition than my last neuro dr. I think I will put some of what you said to good use and ask some question of my new dr. She is great so far. I'll just have to see what happens. Her first goal was to get me feeling more like myself with the amitrip and lexipro (still haven't taken this). I am only taking a half of an amitrip at night and just that small amount has done enough to my jacked up brain chemistry to make me feel a ton better. My over all goal of course is to get rid of the all positional nonsense if possible we will see. My energy level has improved with the amitrip so my positional symptoms are slightly higher and maybe more intense. If I'm having a really busy day and sit down for a long time the intensity of the neck tightness and whoosing in my ears is increased. But, that said I really appreciate the time and energy it took on your part to replay to little ole me. I hope you are doing well. Thanks again.

[guineapig]

yes, anolan, i do rock. about once a day, to the top of the head. :o i use to use the cardboard tubes which the saran rap comes with, but that isn't quite hard enough to distract from the constant ha. i prefer white marble, cause it is particularly hard and it mocks the medical establishment (white walls walked by wackos in white).

[beverly grant]

;)I had Pituitary Brain Surgery in1995. Everything that could go wroung went wrong including a brain leak. That was in Chicago. I moved to the L.A. area in 2000 and my new Nerosurg.and ENT team did two endoscopic surgeries for leak in 2001. Now I am again dripping, and after reading all your postings and remembering what all I went through and the blood patch...I'd rather pass. I don't have severe headache at this time, just the water works when I bend in certain positions. I'm scheduled for a cisterogram this Thursday. My question to anyone out there: I now have consistant severe low back pain centered on my spine and I'm wondering if this has anything to do with the leak? I'm active and weigh 105 lbs. I also wanted to say what a great organization Pituitary Network Assos. is. I've learned much from you all already, thanks!

[guineapig]

;)I had Pituitary Brain Surgery in1995. Everything that could go wroung went wrong including a brain leak. That was in Chicago. I moved to the L.A. area in 2000 and my new Nerosurg.and ENT team did two endoscopic surgeries for leak in 2001. Now I am again dripping, and after reading all your postings and remembering what all I went through and the blood patch...I'd rather pass. I don't have severe headache at this time, just the water works when I bend in certain positions. I'm scheduled for a cisterogram this Thursday. My question to anyone out there: I now have consistant severe low back pain centered on my spine and I'm wondering if this has anything to do with the leak? I'm active and weigh 105 lbs. I also wanted to say what a great organization Pituitary Network Assos. is. I've learned much from you all already, thanks!

hey beverly grant,

you should place your post in a new thread in this forum so it will get some more attention.

what hospital did you have your '01 surgeries? and where the cisternogram? how did it go? who is your neurosurgeon? do you like him/her?

i am unfamiliar w/ any connection between a cranial leak, such as you have, and low back discomforts. although the cranial meninges are connected to the spinal meninges and it is possible. as good a guess is that they are not connected; it could be a slipped disc or pinched nerve. a simple lumbar mri would help rule these things out. also, despite how much we discuss leaks in this forum, they are rare. so it is unlikely that even constant, severe back pain along with no other symptomatic indicators indicates a leak in that area.
i had at the same time as my leak, a torn L4/5 disc which caused constant low back pain which was often severe.