SALTY taste - salty feeling in stomach

[ainee]

Perhaps someone on CSF can help me. I've had horrific neurological (nerve)symptoms, which I believe were brought on by head injuries. I had a fall on my head as a child - Nearly 30 years later, an x-ray showed fused neck vertabra - I suffered dizziness from time to time - NO headaches, NO visible leaks anywhere - I've suffered with itchy skin since about 1990 and had many sore throats, with raised up lumps sometimes. In 1995, I had another head and spinal injury - I was in a tractor - I bounced up, hit my head on the roof of the cabin - also in a split second, I got a whack on the bottom from the tractor seat as I came down - this must have caused some spinal injury. Three days after this accident, I felt as though I was going to black out. I started to have many dizzy, faint like spells, cramps and twitches. I also started to get a salty taste in my saliva and a feeling of salt in my stomach and body - (perhaps this was from a slight leak somewhere.)
In 1997, I suffered Opisthotonus - arching of the back, (not knowing anything about medical terminology, I thought this was from hard work and getting older - it took 4 years to discover what this condition was) - in 1999 I suffered an almighty twang and vibration in my spine - I also suffered another farm related head injury - then in 2000, I noticed my head would rise up or to the side.
In 2001, I started to have severe spasms in my spine, horrific cramps, tics, twitches, involuntary movements, facial grimaces etc. An Osteopath said that my back muscles were "all knotted up". I guess "knotted up" back muscles did damage to my nerves to cause the neurological symptoms.
After many tests, x-rays, CT scans, MRI's etc., nothing was found to cause my symptoms. I had CT scans and MRI's with dye and later when I did more research, I asked for them to be read again - they were normal, except for some slight ageing. Some blood tests were a bit suss., but after a month or so, they were ok. In 2001, I found info of a treatment which suppressed the symptoms, and after 18 months of research and experimentation, the symptoms started to reverse. I'm reasonably well most of the time - but feel as though the cause hasn't been found, as I still have a few symptoms.
Maybe my injuries caused a CSF leak somewhere. I never went to the doctor for any of my head injuries - so my doctors didn't know about them. In 2001, a neurologist wanted to do a lumber punture - but no way was anyone putting a needle in my spine - I had enough trauma with the neurological symptoms as it was. I read the other day that CSF leaks can be detected in blood tests. I wonder if anyone has had a blood test to show a CSF leak. Does anyone think this could have caused my salty taste and salty feeling - which is still present at times? Thank you.
ainee.

[PainInTheNeck]

Hi Ainee...

It sounds like you have really had some hard knocks. No pun intended. I have never heard of a blood test that can detect a csf leak. The only accepted test, that I know of is an cranial mri scan with contrast that will show a change in your meningi.

Everyone I know of who has a csf leak presents with terrible headaches. I am not sure that this is what you are or are not dealing with but I thought I would let you know what I thought might help you to know. There is a site that describes symptoms, etc that is called SpinalHeadache.org.

Best of luck to you.

[Concerned Gal]

Hi,

Sounds like you've been having a really rough time.

As for the blood test, i don't think it can detect if you have a csf leak, but I have read that if you have an untreated csf leak for long enough, you can experience changes (i think it's an elevated) in your white cell count.

As for the taste in your mouth. When I was suffering at my worst, I had a funny taste in my mouth. I wouldn't have said salty, maybe more creamy metallic taste. On the times I was physically sick, there was like a different white substance than I had experienced before (sorry for tmi, but i'm trying to help).

You have had a lot of neurological/spinal problems. My uneducated opinion (i'm not a dr but i've read enough for my own knowledge) is that it doesn't sound too much like a csf leak to me. But you certainly have had a bit of trauma and it could very well be the after effects of those incidents which would have affected your nerves/muscles etc.

Good Luck

[ainee]

Thank you both for your replies. Yes, I've had a bit of a rough time - and some hard knocks along the way - but when the going gets tough, the tough get going. I don't think that I'm all that tough - but I am still going.

As I don't have headaches, I guess I don't have a leak, but I thought it was worth asking those who have this condition, to see if anyone suffers similar symptoms - especially the salty taste.. I overheard a doctor ask a patient who'd had brain surgery, if she had a salty taste. A few weeks later, I rang that hospital and a young doctor said that as I hadn't had brain surgery, I shouldn't have any salty taste. I didn't tell him about my head and spinal injuries. I did have dizziness, faint feelings - and I forgot to mention in my post - mini seizures many times - I was awake, but couldn't hear the wireless, air conditioner or rain on the roof for several seconds.

Maybe the info I read about a blood test for CSF, was for changes in the white cell count. My first head injury was many years ago as a child - so if it was a slow, undetected leak somewhere, I suppose something would show up now - all other tests were ok - so maybe I should ask for the white cell count to be done. I had some symptoms before the tractor accident - then after this injury, I developed many ongoing symptoms, which I didn't take much notice of. Perhaps I should have gone to get checked out when I was injured.
Yes, I believe it was due to my injuries why I had the bagfull of neurological symptoms. But along the way, after much experimentation, research etc., I believe that the simple treatment I read about and experimented with, and others which gave the same benifit, will give better health to many - regardless of diagnosis or cause - as many illnesses and conditions have similar symptoms. If this is so - then all the above will seem worthwhile.
Thanks again for your replies.
ainee.

[Edward]

Hi,

Thought I'd get my "two cent's" in here. First of all, I have come across references to CSF as having a salty taste. In fact, right after my head injury my neurosurgeon asked me if I had a salty taste in my mouth/throat. (I have also run across references to a sweet taste or as some here describe a "metallic taste" so I think it just depends upon the person and how they perceive the taste). Secondly, you do not have to have a headache with CSF leak. It all depends on how large the leak is. Although usually headache is present that is not always true. Take my situation for example, I apparently have a small leak that does not leak enough for a headache to result. My understanding is that the headache results from too much CSF being lost from the inside of your skull which then results in less cushioning for your brain. But your body constantly makes CSF (quite a bit of it in fact) and so if you have a small leak you may never actually be deficient of fluid inside your skull.

I am not saying you do or do not have a CSF leak. That, of course, would be impossible for me or any of us to say. But I just wanted to clarify a couple points. Of course, I am no medical professional. I have just done a lot of research on the Net regarding CSF leaks. You should followup with a neurosurgeon (preferably someone who has a little experience in CSF leaks).

Take care....Ed.

[ainee]

G'day Ed - thanks for putting in your two cents worth - or two bob's worth, as we used say here before we got decimal currency.
I believed my symptoms were caused by lack of oxygen to my brain, due to injurys and/or toxin - (Cadmium detected in test 2001/2.) When I came across CSF here a few days ago, I thought perhaps I could have a leak. I've had many CT's and MRI's over the years - with and without dye - and ECG's, which all appeared normal. If I did have a small leak from somewhere, do you think it may have been missed in these tests?
As I hadn't been to the doctors about my head and spinal injuries, they didn't know about them, so perhaps wouldn't have been looking for a leak. After reading your post, I made an appointment to see my doctor in 3 weeks, the earliest I could get. I'll ask him for a blood test for the white cell count and a referal to a neurologist who knows what he's taking about. I won't mention here what 2 other neurologists said to me.
Thank you all for giving your information.
ainee.

[guineapig]

ainee, sometimes yah just come across the right article and ... bam. Consider input of the other posters though. I am not familiar with cranial leaks to give any misadvice; if I had some misinformation on csf leaks I wouldn't give it though, for misadvice, go see a neurologist or most any doctor for that matter. guineapig.

"Nontraumatic or spontaneous CSF leaks are much less common than their traumatic counterparts. Females are affected more frequently than males (2:1), and presentation is most common in the fourth to fifth decades.60 Rhinorrhea, induced by coughing or sneezing, is the most frequent symptom. Patients also may complain of a salty or metallic taste in the back of their throat. Intermittent symptoms can persist for years, misdiagnosed as allergic rhinitis or postnasal drip.60 The occurrence of meningitis is rare but may be the only clue to diagnosis. In contrast to traumatic CSF leaks, anosmia is rare."

http://www.emergemd.com/bniq/article.asp?article_ref_id=17-4-1

The Management of Cranial and Spinal CSF Leaks

G. Michael Lemole Jr., MD
Jeffrey S. Henn, MD
Joseph M. Zabramski, MD
Volker K. H. Sonntag, MD

[ainee]

Thanks guineapig for this information. I don't understand all the medical terminology from the site you suggested, but what I do understand is interesting. When I came across CSF info on BT the other day, I assumed leaks only happened in the skull. Maybe I have a small leak somewhere - I've had what I thought was sinus for years - inside my nose gets swollen almost every day, which nasal spray mostly clears for a time.
I often have a sore throat and sometimes had raised up lumps down the back of my throat. Years ago, one top specialist advised me to take an antacid.
Ed refered to the salty taste in his information - (I still have a slight salty taste) - maybe my doc will look into it further now when I go to him with this knowledge, and that perhaps the injuries I had years ago, could have done damage that has never been investigated - although the tests which I've had, would have surely showed something - but then they may not have looked for any sort of leak, as they didn't know of my injuries.
Thanks again
ainee.

[ainee]

I've been doing more research, so I'll know more of what I'm talking about when I see my doctor later in the week. I came across another test (search in Google) for CSF leaks - and wondered if anyone has had it done or heard about it. This test is by taking a fluid sample from the nasopharynx (I didn't even know we had one of those) - it lies behind the nose and above the level of the soft palate. The test - Intrathecal fluorescein - test beta-trace protein assay. I don't understand it - but I'm sure my doc will.

I used to get very sore throats- and over the years, I've sneezed and coughed a lot. I thought this was caused by the salty taste and feeling in my throat. I've had a salty feeling in my stomach and skin for years - sometimes I've hardly noticed it - other times I feel as though I've been pickled. I have saltyness at the moment. I don't suffer headaches, but if a leak was further down in my neck where I have fused vertabra, then this might explain why I don't have headaches. There is a possability that my injuries have caused a leak that has gone undetected - and it could explain some of the symptoms I've had, so I think it is worth following up.
Does anyone know about this test?
Thanks
ainee.

[GingerLox]

Dear Ainee...............
I can't believe that someone is actually saying what I have said for years...........sometimes the fluid in my body feels like it is pickling me. I have felt this for many years, and given that I have many Lupus symptoms I used to think it was a hormonal/electrolyte imbalance caused from residual kidney damage. Then I began noticing that it always seems worse after I have eaten something very salty. I thought perhaps I had what is know as leaky veins that lose proteins and salts into the tissue. But as time has gone on.........I know that I am leaking CSF fluid into my body tissue (in my case I believe it is through the carotid canal right next to the inner ear) and as it leaks into the tissue it burns and irritates it. My experience has been that I normally retain common body fluid in my tissue when I use larger quantities of salt in my diet as it is..........then when the extra csf fluid combines with that normal fluid retention, it doubles up on the salt and spreads it throughout my entire body system, and on those days my entire body burns like someone poured salt water on open wound (without the air to aggravate the symptoms.) I get very puffy skin when that happens. My face gets very puffy too!

As for the itrathecal florescein test............Intrathecal (means putting a needle into the spinal column and penetrating the thecal-----surrounding sheath that holds the spinal fluid) and injecting flourescent dye into the spinal column and then placing pledgetts (small cottonballs on the ends of strings) into each sinus cavity to include the nasopharnyx. Then a series of ct scans is done over the next 24-48 hours and then the pledgetts are removed to see if there is any beta transferrin present on any of them (beta transferrin is a protein that can only be found in spinal fluid......so if they are positive for beta transferrin.........you have a leak).

BTW.........I have a cranial leak and don't get headaches unless I haven't leaked through my nose or ears that day. I have the opposite problem than many here who have headaches from losing the fluid. I think in my case and several others on this board, that we have either built up our CSF supply and we don't get low enough our fluid that our brain loses cushioning or maybe our leak spot is the only way our fluid gets out of our system (broken resorption capabilities).

I think there are enough unanswered questions about your situation that I would continue to pursue your case as a possible leak if I were you!

~GingerLox

[ainee]

G'day GingerLox - Thank you for this info - By the sound of it - the test involves a needle in the spine - I think I'll give that one a miss.
Surely, if there was a CSF leak in the nasal, sinus area, they could find the protein in nasal fluid in a hanky. I asked for an old hanky, that had missed the wash, that I'd used when I was very ill in 2001, with lots of nasal fluid on, to be tested a couple of years ago for something - I can't remember now what it was for - but maybe I was on the right track. It seems you have to tell them what to test if it is something out of the normal testing proceedures. I'll ask my doc to see what he says.

I don't have any swelling or puffiness, but I did gain a lot of weight when I was very ill. Over the past year, I've lost about 14 lbs, without really trying.
Did you have an injury to cause your leak? - and do you have any other symptoms - apart from the pickling?
Thanks again
ainee.

[GingerLox]

Dear Ainee............

Unfortunately they cannot take the test from a tissue or hanky, but they can test the fluid that comes out of the nose on a daily basis once it is collected in a vile. It can take me as much as a day to collect the amount necessary per my rhinorrhea. There is a test that can be done on the fluid that involves collecting it on 4x4 gauze.........but there must be blood present with the fluid (typically this is done when there is a head injury that involves bleeding to check to see if there is CSF present). The 4x4 is looked at to determine if the "halo" effect is present. Apparently there is a spot of blood with a faint ring around the outside edge. I'm not sure if they can create this scenario with a drop of your blood and a nasal sample........hmmmmm?

Another personal test that you can perform with a hanky is simply, once you use the hanky, if it dries without any residue on the hanky or kleenex it is likely CSF fluid. I can use a hanky that was saturated with fluid in the morning, let it dry and continue to use the same hanky over and over. It never has anything left on it, once it dries. The hanky just feels like it has water on it.

As for the history of my leak, I wrote about it under the topic "Another cranial leaker here" a few weeks ago...........sorry it is the long version!

What do you feel caused your weight gain? Just curious!

I love the G'Day..........where are you from? I'm wondering if you are from Australia..........How cool is that!

fondly
~Ginger

[ainee]

G'day GingerLox - Thank you. I just read your other post you mentioned in CSF - also the replies. It seems many have symptoms which aren't believed.
There has never been any blood from my nose - other than a normal nose bleed occasionally. The old hankys I kept since 2001, when I was very ill, were just clear fluid - no mucus. I used to sneeze a lot and also have a cough - I've suffered a stuffy nose for years. I thought it was sinus - but the other day, I saw the inside of my nose was swollen. No wonder I couldn't breath through it. I use a nasal spray, usually morning and night. I also use medication since I developed inflammation in my lungs and asthma a couple of years ago - which gets worse in the colder months. I'm not too bad most of the time. I think the treatment I've been taking since 2001, although it hasn't fixed the asthma and saltyness which comes and goes, I know it has helped me gain better health by suppressing and eventually reversing most of my other symptoms.

My weight gain - well I really don't know. I was working in the shearing sheds around the area, spraying weeds and carting wood - manual labour and pretty fit. Maybe it was a stuff up of my tissues and cells from lack of circulation and/or oxygen due to my injuries. The treatment I experimented with helps give better circulation - I learnt this from documenting everything I took. It raised my temperature, increased my heart rate as if excercising, increased my blood and oxygen circulation 24/7, cheaply, simply, without drugs or machines. I don't often suffer with cold hands and feet now and I believe the treatment has reversed most of the nerve damage caused by 3 injuries to my spine years ago.

Yes, I'm an Aussie. We've been in one of the worst droughts in our history - but over the past few days, many areas, including where I live, have received good rain. Maybe not drought breaking rain, as we need more to really get into the ground to help the grass grow before Winter. There are a lot of areas where it never seems to rain though.
Have a nice day.
ainee.

[Concerned Gal]

ainee,

I'm an Aussie too!

[ainee]

G'day Concerned Gal - I noticed there are a few Aussies on BT. I think it's one of the best health forum sites around.
A quick search found that most of your posts are on CSF threads. What's your story - injury, symptoms etc - and are your symptoms believed?
Have a nice day
ainee.

[ainee]

G'day again -
I went to my doctor yesterday - what a wasted effort - and he charged like a wounded bull - (the cost of the visit). When I had my injuries, I didn't go to a doctor - I mentioned these injuries yesterday - he didn't seem too concerned, as I'd had CT scans etc., done over the years since, which shows no abnormality. I forgot to ask him about the hanky test - but I know he'd think it as a crazy idea.
I told him of the CSF information I'd learnt from you all here. He said that as I didn't have headaches, I wouldn't have a leak - and a blood test wouldn't determine if there was a leak. He said there is salt in our body and a leak wouldn't cause my salty taste or feeling. I guess some just don't don't believe others experiences.
Well - at the moment, I feel like a pickled cucumber - perhaps it's the Low in the atmospheric pressure, letting a slight leak happen. I notice the saltyness more so when it's dull, wet etc. GingerLox - or anyone else - do you feel more saltyness when there is a Low in the atmospheric pressure?
ainee.

[GingerLox]

Dear Ainee...............Hello back to you, from the snow covered state of Kansas! I have recently been feeling a lot of the burning sensations in my body also. I don't know about the atmospheric pressure here currently nor if it correlates with my pickled sensation. You may be on to something though, because I have heard that headaches that are related to high/low brain fluid levels can be affected by the atmospheric pressure. That's an interesting thought!

As for the doctors reaction, since this is all so rare, I think that it takes a very good, patient and sensitive doctor to get to the bottom of these issues.
Continue to trust yourself and pursue the issue until you get answers. You may have to switch doctors to get more answers.

As for the headaches...........you heard it on this board from many of us...........that a headache is not always present. Especially if you are not low on fluid because your body has compensated over time to adjust to the loss.

As for the recent body burning/pickling..........do you ever feel like your bones are aching like they are soaking in the fluid? I get so much long bone pain with the salty fluid feeling. Just curious!

~Ginger

[ainee]

G'day Ginger - Seeing you have snow, there may be a Low = less oxygen in the atmosphere. I don't seem to have a burning feeling in my body or bones, although my body seems to feel tired and sore at times. I guess I've become accustomed to the salty feeling over the past 12 years or so, without taking much notice unless it's very salty, but I get very tired when I feel the saltyness. We've had many Lows for a couple of weeks - less oxygen in the atmosphere may have something to do with CFS - tiredness - also. I don't notice the saltyness as much when it's fine weather and when there is a High. The old farmers knew rain was coming when the water springs in the ground opened up and started to flow - perhaps slight leaks are like that also, they may start to leak when there is less atmospheric pressure. Try telling a doctor that though!
I noticed my other symptoms were worse at night, when it was cold, raining, frosty etc., and there is supposed to be 25% more carbon dioxide in the air at night time.

About my doctor - he just doesn't believe what I'm telling him. He discounts everything I put to him. - I said that perhaps some still think the earth is flat. I've been to several doctors and specialists, but none of them will look outside the square. I keep going back to my doc. - since 2000 - He's keen for his patients to take vitamins and minerals - but when I suggest for him to prescribe higher doses of VB1 and VC to his patients with neurological (nerve ) symptoms like I suffered, he refuses to believe me. He refused to take in what I told him re. the replies on this board. I think in many cases, the information from someone who has gone through a similar illness or condition, has more helpful information than others who have not. Thanks again to you and everyone who replied.
ainee.