I'm going to modify your list of symptoms to keep the ones that I'm also experiencing, and also change the description to fit mine.
Quote:
Originally Posted by scout316
Okay here are my current symptoms:
sensory disturbance
muscle weakness
uncoordinated (slightly)
sweating (at night)
fatigue(constant)
tinnitus(left ear...somedays worse than others)
unsteady walk
chronic constipation
bloating and gas
cold intolerance
ataxia
I really wish I could be of more assistance to you on this. About the best I can offer up right now is to show that we both have something similar going on, except I'm 28 and you're... what age again? I know it's impolite to ask a woman her age, but in this case I think it would be helpful.
I really have no idea on what the odd bruise on your right shoulder could be from.
I got the saline nasal spray today, there's really no instructions on "frequency of use." However a couple places I looked on the internet about sinusitis mention using saline spray every day for a week. I think that's what I'll do.
Hey Bill...I think this thread I started might be getting really long,but we can always start a new thread...we have so many symptoms that we could post a whole lot of threads...I think that's funny...I like that.
Well we do share so many symptoms...that is amazing...I didn't realize that before.
If we could just get a complete diagnosis now.
I used to attribute most of my sx to the complicated B12 problem I have...lately I've been wondering what my B12 level is now...yeah so it was 998 on March 4th & 605 on March 8th...that is so weird....never been high like that before.I am really upset that my dr. didn't check my B12 on Jan.4th when he gave me a B12 shot...my last shot before that was back on July 17th...so I went almost 6 months without a shot....now I don't know what's going on with my B12.So I'm thinking of having my B12 level checked next time I see the dr.So far I'm scheduled to see the nurse at my neurolgist's office on May 6th(that's how they like to do it there...weird,huh?).I guess I tell the nurse how I've been feeling and so on and then she decides what tests I need?so confusing........the only good thing is I don't have to pay my co-pay which s $60.00 for the neurologist & $30.00 for primary dr....oh yeah and I just found out my insurance only pays 90%(not 100%)after my $500.00 deductible.They also don't pay for the B12 shots(or any shots)...I knew that alreadyoh well....
So I never told you my age...hahaha...okay I'm 46...,but people always think I'm younger(I like that..haha).I have 4 grown sons who are all married & 5 adorable grandchildren.I am a very spiritual person so I spend a lot of time listening to people's problems,praying for them and trying to help them...I am the evangelist in my family so to speak.
Sometimes I think maybe I'll never get well...like I'm supposed to be sick with all these sx in order to help others,but in my heart I believe that I will be well someday...I keep my faith strong no matter what I have to go through.It's really tough at times.I try to be positive even though I feel like I'm dying on the inside most of the time.I'm sure you know how that feels.
Anyways I hope that saline nose spray will help you.It shouldn't give you any side effects.
Well have you tried eatting bran to help with your constipation?It works so good...I just go like automatically everyday now.I'll wake up in the morning and lay there in my bed for an hour,because I hate getting up,but then I have to get up,because I have to go..it is great...you should try it...I eat the raisin bran dry,because I'm allergic to milk(wheeze from it)...it really doesn't taste that bad either.
it's true when the threads get long here, they often get closed down. i'll start a new thread pretty soon.
so from previous correspondence, i take it you have been a nurse before? i think you mentioned this once. anyhow, your relatively vast knowledge of health-related topics must come from somewhere.
i've used raisin bran and other bran cereals before, but most of them have too much sugar. too much sugar can cause fatigue for me. but the thing that helps the most these days for my chronic constipation is ground flaxseed. even breakfast cereals that contain flaxseed help, although the best is really the flax you buy separately and can add to food/drink/whatever.
i gave that saline spray a shot the other night. however, unlike Afrin (medicated spray) there was no drainage or clearance. I did notice a couple semi-unusual things, though. there was some popping/crackling in my right ear and later on it seemed like the head pressure had moved to that area above the nose, between the eyebrows. but that was all i noticed, i don't know if that means anything, or not. the pressure was still killing me when i was lying down to sleep, just like usual.
i'll continue using the saline spray for a week. i guess the idea is that moisturizing blocked up sinuses is a gradual process, eh?
well I was reading about "pain between the shoulder blades"today...I shouldn't have,because it went on to say that it could be liver cancer,esophageal(sp?)cancer,gall bladder...yuck....I was interested in that,because occasionally I get that pain there...all these sx...what to doooooo?
what bothered me about what I read was that problems with the liver can cause night sweating...interesting,isn't that?plus it said you could have a
discomfort feeling under right ribs(I have that!)....I still need to get that CT scan done....wonder if anything would show...whenever I have tests they're either normal or show something that the drs. can't help me with?that is frustrating.
no I never was a nurse...I was a caregiver though,but I never mentioned that on the boards.you think I know a lot about medical things...well it comes from being loaded with sx and drs. not doing jack to dx me...hahaha...I had the best medical books,but after I got better and thought I wouldn't be ill anymore I got rid of all those books...wish I didn't do that...oh well...can't cry over things like that.
what you said about the nasal spray when you used it....sounds like it did something in there....did you ever try a steroid nasal spray?I'm trying to remember which is which with headaches...they say one kind gets better when you lie down and the other kind gets worse..I think tension gets better & pressure gets worse(which would be like in your case)when you lie down.Head pressure is actually considered a headache.
well anyways I got liver cancer on my mind tonight...now I really feel like a hypochondriac....but that purple bruise type thing on my back is concerning me just a little....plus the pain between my shoulder blades(that eased up after a couple hours...)....
so then your head pressure feels less when you're standing and the worst when your lying down?man I wish you could have a CT scan of your sinuses Bill....did you ever have one?You need a good ENT dr. who knows his stuff...how can you suffer for so many years...you are stronger than you think.....
I understand what you mean about the pressure in your head. Mine never goes away. I am getting use to it. At first when it got bad I felt like I was watching the tele rather than living my life. I felt so remote from everything. I am being treated for a mastoid infection. I am on the sixth course of antibiotics. The MRI found fluid when I had it done in January. I have been going to doctors since last August and not been able to work since last October. I have alot of head pain around the mastoid however nobody thinks its very important. I am with Bill. This weird pressure never goes away. My right ear is still oozing and is smelly. I think I will try to see an immunologist to see if I am having the right treatment. Hopefully they may have seen someone like me.
what you said about the nasal spray when you used it....sounds like it did something in there....did you ever try a steroid nasal spray?I'm trying to remember which is which with headaches...they say one kind gets better when you lie down and the other kind gets worse..I think tension gets better & pressure gets worse(which would be like in your case)when you lie down.Head pressure is actually considered a headache.
so then your head pressure feels less when you're standing and the worst when your lying down?man I wish you could have a CT scan of your sinuses Bill....did you ever have one?You need a good ENT dr. who knows his stuff...how can you suffer for so many years...you are stronger than you think.....
have a good night....Scout
Believe me, I know all about being a hypochondriac and looking up symptoms, and finding something very unsettling. But I've finally learned not to look into serious diagnoses too much, only to "graze" on that data here and there, rather than look into all the details and try to find links to my Sx. I used to get anxiety attacks from that.
Yes, my pressure is almost always worse when lying down and a little better when standing. Does that really seem like a sinus problem to you?
I still don't see how head pressure could be caused by migraine. I have head pressure constantly. But I have never heard of anyone who has a migraine 24/7. A website about migraines I went to recently said that migraines are not constant, at least.
The second time I used the nasal spray was like the first--the pressure "shifted"--but still, no drainage, and no relief. The saline actually leaked back into my throat and gave me some irritation. I'll continue, nonetheless.
I also wanted to say, with some outrage, that this unknown condition continues to ruin any ability I have to concentrate. I just can't perform any semi-complex mental task for longer than 5 minutes without losing focus, that is if I can even start at all. My short term memory is becoming less and less competent. The head pressure is no doubt a large part of the culprit.
I don't know what I can do to increase focus anymore. Caffeine used to help but no longer, the more I take the worse my fatigue gets, in the long run. Omega 3 fish oil has helped in the past, but now I've linked it to these strange visual episodes I get in the morning. It is a definite link... I've started and stopped Omega 3 fish oil about 6 times now. Every time I quit, the episodes decrease in number. If I go back on the fish oil, sometimes I get these "waking auras" every other day if not every day.
I know, I'm just complaining, and yes I know some people have it so much worse. But it really sucks to lose your ability to concentrate, all because of some problem that's too vague to be diagnosed.
If anyone can think of any supplements that could boost focus, lemme know. Exercise can help but like I said before, nothing really works reliably, so long as I have the head pressure constantly.
I came across some very interesting information yesterday...here it is:
First of all do you notice any relief(from head pressure)when you drink coffee? (from the caffeine...so soda's would be included also).Caffeine has strong vaso-constrictive effects,reduces blood volume in the skull which in turn relieves pressure & headaches.I think there is Excedrin that has caffeine as one of the ingredients in it.Have you ever tried that?
Next:this is quite interesting......there are some types of head pressure that have a name for them...I could hardly believe it when I read about it.The first one is called:ICP(intracranial pressure)which sounds exactly what you are experiencing>constant head pressure<.The other one is PTC(pseudotumor cerebri)which is also elevated intracranial pressure...it's actually fluid and not a tumor.
There is a way they can relieve the pressure......they can use prescription diuretics to reduce the amount of CSF(cerebral spinal fluid)produced by the body thereby reducing intracranial pressure.I think that is awesome....
Also it stated that it is very hard to differentiate between "MS" and PTC.
If you do have ICP or PTC it is treatable...but the way they dx it is with MRI and or spinal tap....I'd go with the MRI,because spinal taps(lumbar punctures)are not recommemded for anyone who has chiari(as I do).I wonder if a CT scan would show it also?
To think that you could get relief from certain diuretics is really amazing....
I've heard about caffeine helping some people with head pressure before, elsewhere on the Net. There was a group of people who suspected CSF leaks (or had that diagnosed) who had constant head pressure. But two things made them different from me: their pressure was greatly relieved lying down, and caffeine helped most if not all of them.
In my case, caffeine makes mine a little worse. Lying down is where it feels the worst, too. Excedrin I think contains an NSAID besides caffeine, and I had a major reaction to Advil before, so I can't use that product out of caution.
That bit of information, that it's tough to tell PTC and MS apart, that's scary. I've asked my psychiatrist about MS before, because I had months long anxiety problems from someone online suggesting I had it. He said you should look for sudden loss of muscle control. Thankfully, I haven't had that so far as I know.
Whatever happened to the sinus theory? I have been hoping this pressure is from my sinuses, rather than from some real pathology like the other conditions.
I apologize if I sound a bit snappy lately. This whole thing is really getting the better of me. I can barely sleep at night anymore because of the damn discomfort it causes, and the brain fog is absolutely horrible. I can't even begin to read a book anymore, quite literally.
I wonder why you sleep lying down when it is so uncomfortable. I have been sleeping propped up with pillows for 6 months. It really helps with the head pressure and some of my other symptoms,
OMG I'm sorry if what I wrote about upset you....I was just thinking how your blood tests showed "possible dehydration"...which seems to me that you need to keep yourself more hydrated.That could be a "clue" to your head pressure and also that would relate to your sinuses being "dry"which doesn't help head pressure.Also it is a fact that headaches/head pressure can be due to not being hydrated enough.
So it could very well be sinus related....I still think that's a very possible theory.
So what do you drink usually?Do you drink water?I still think there's something going on with your sinuses and your hydration.
Constipation usually is related to dehydration also.There seems to be a lot of "clue" in your sx relating to dehydration.I'll research some more on this for you.
Have a good day my dear friend...I'll post back again later today~
OMG I'm sorry if what I wrote about upset you....I was just thinking how your blood tests showed "possible dehydration"...which seems to me that you need to keep yourself more hydrated.That could be a "clue" to your head pressure and also that would relate to your sinuses being "dry"which doesn't help head pressure.Also it is a fact that headaches/head pressure can be due to not being hydrated enough.
So it could very well be sinus related....I still think that's a very possible theory.
So what do you drink usually?Do you drink water?I still think there's something going on with your sinuses and your hydration.
Constipation usually is related to dehydration also.There seems to be a lot of "clue" in your sx relating to dehydration.I'll research some more on this for you.
Have a good day my dear friend...I'll post back again later today~
Scout
No, you didn't upset me, please don't worry about that. The anxiety I had over these more serious conditions happened long ago. I've learned not to let such things affect me too much anymore, as it is.
About the dehydration thing, yeah I do sometimes have unusual thirst. However, I usually drink water, and *lots* of it. I drink at least 8 glasses of water a day. True I have up to 3 cups of coffee, which is a diuretic, but I don't see how that could cause a longterm state of dehydration. Alcohol I avoid like the plague, so that's not a factor.
I'll try sleeping propped up with more pillows. But that has its own disadvantages, I think, which is why I've been apprehensive about it. I don't know if it's so great to have your back get used to that.
Also, have you (or scout) tried warm compresses on the head to relieve pressure? Does it help?
My back seems quite happy with the sleeping on pillows. I was getting desperate because things were so weird when I lay down I was scared to. I used to keep myself awake as much as possible. That part is a lot better now. I had not thought of warm compresses, however the osteopath said that cold was better than heat as far as constricting blood vessels and helping swelling for the back. I will have to ask if it works for heads also.
Bill....also you can get dehydrated from drinking too much water...did you ever try drinking gatorade...just a little bit throughout the day?That's what my dr. had me do when I was dehydrated from sweating so much.
Or you could try diluting diet soda with water...half & half which is what some drs. recommemd for people who tend to get dehydrated often.
Gatorade is loaded with sugar (high fructose corn syrup in fact).. I need a way to get electrolytes with minimal sugar. Diet soda is out, that's got aspartame, just as bad if not worse than sugar, esp. for someone with possible migraine issues.
I haven't read all the posts, but I can see you've done a lot of research trying to find out the causes for your problem. Just saying this because I don't want to go back to square one with my comment. If, however, my comment goes back to square one for you, it's just my experience with headaches, severe anxiety attacks, weird sensations, tinnitus, etc.
What has helped me through the years is a combination of relaxation techniques, meditation, yoga and a healthy diet. When I take supplements - Omega 3, multivitamins, B12, I can feel something is affecting my body in a strange way. I wonder how many chemicals a multivitamin has and what they do to the body. If I take multivitamins everyday, after a few days my anxiety levels are way higher - I get more headaches, weird sensations, etc. I haven't abandoned the supplements completely, I just don't take them every single day. That's just too much.
On the other hand, body&mind react quite positively when I eat a nice meal (nothing fried, very little salt, vegetables, not much read meat and so on and so forth). That alone, however, is meaningless without relaxation techniques, meditation and some light yoga. And that has to be a daily practice. The scanning on one's own body seem to oxygenate the internal organs. And a few gentle yoga postures can massage these organs.
Have you tried these things?
Best,
Alex
PS. by the way, the best rest positions are either back lying with a pillow under your knees or side lying (a pillow between knees is even better when side lying). I have back/neck pain and the X-ray showed me why. I cannot fix it - too late. All I can do now is to try to improve my posture and do some specific exercises.
So I'm thinking of having my B12 level checked next time I see the dr.So far I'm scheduled to see the nurse at my neurolgist's office on May 6th(that's how they like to do it there...weird,huh?).I guess I tell the nurse how I've been feeling and so on and then she decides what tests I need?so confusing........the only good thing is I don't have to pay my co-pay which s $60.00 for the neurologist & $30.00 for primary dr....oh yeah and I just found out my insurance only pays 90%(not 100%)after my $500.00 deductible.They also don't pay for the B12 shots(or any shots)...I knew that already
oh well....
I am a very spiritual person so I spend a lot of time listening to people's problems,praying for them and trying to help them...I am the evangelist in my family so to speak.
