I broke my neck in 1987 when I was 15. Shattered c 3, 4 and 5 and bent/compressed the spinal chord and have two bubbles, or dead pockets in the chord in that area. I did this by diving into a pool and hitting the pool to the center of my skull at the top, I was quadraplegic for a few months and have had problem related most my life, but has been overall good until the last 4 years whn i turned 37 when I got acute symptoms that were seasonal and and are crippling. A lot of damage is to the nerves that deal with cold/hot and sense moisture, and am terribly sensitive to cold so that, I have to take narcotics which helps alot, and as well with my related arthritis at the neck. I have extreme allergic reactions to most modern medications and lots of foods.
I had moved to central florida, but had to move as daily I woudl get heat related migrains in summer, where aftert 2pm in summer, if in direct heat, mouth would taste irony or liek blood, and Id almost collapse daily and get acute depressed state and have to lie down. I moved back to Tennesee and the migraines have not returned.
I moved to FLroida as I had acute problems suddenly appear that I know know are directly related to changes in barometer and start it seems the day the leaves change, and end for the most in mid srping and are severe and cripplng. AFter 4 years doctors coudl not figure out the cause, the at one time thought it was pollens, but, I had no insurance and was hard to get help that was thorough, took me 1 and a half years before I finally got a mri which foudn the two pockets in my c spine on the left and right side of the central fluid core and foudn as well have a lesion in the mid thoractic spine, which I did not know about.
Startign in spring usually, and I had signs years ago but they were much less and I ignored them and went without meds for 10 years and woudl just go without sleep.
But these are the symptoms. I get nerve pain in my right foot and arm, which causes stress or confusion in my brain. [I note also that I have a regular cold hot related nerve pain that causes confusion to my brain, which the narcotics solve for the most and this is unrelated, but unmedicated I cannot go out in the cold and if in water I cannot tell temperature or tell if my body core temp decreases, until I get ot of the water, which, in such case, as I found this spring, my body core went down and in teh 30 minutes in when my body temp tried started to balance, I have the same symptoms as the ones I despcribe for the seasonal...
Starting in fall this year, exactly the day the leaves changed, and goes away with an indian summer, and has come in 2 major hits where I almost hopsitalized myself, but I learned to jsu twait it through as it goes away as suddenly as it comes with the barometric pressure going back to 30 or above, [it' can be absolutly devistating with big weather comming through], but these are the symptoms.
I get severe ear ringing. Feels like my head is filled with cotton. OFten sinuses close totally, within the span of a few seconds, [ears ring albeit from fall to spring], confusion, nose runs, sometimes nausea, loss of thoughts, hyperaesthesia,[sounds are deeply disturbing, movemnent, touchign things can be overwhelming], in acute weather patters of change, smell of rotten mucus, symptms of fever, chills, shaking, even in a warm shower, sweats, clammy hands, severe acute attention,[like when given a shot of pure adreniline], myopia, or a sense of confined consciosuness, anxiety, panic and stress. As soon as the eather changes, sinsus open up and all anxiety goes, feel at peace again, and its like notihng happened and then just have my normal pain the narcotics seem to help, as in that pain, the nerves seem to confuse or overwhlem the brain, and tiredness exacerabates it.]
When it started I just didn't sleep for a week at a time, tried meds such as lyrica and all the newer ones and all those make me utterly ill and paranoid and the meds are almost as bad as the problem itself but, liek with Lyrica, I can sleep, but it doesnt stop the pain, just confuses it, sort of unfocuses it, so your brain doesnt knwo how to interpret it, but the lyrica efects my whole motor system and i get depressed, and its liek I am drunk and get, as in all the newere drugs, tremors and often as with lyrica, will loose strength in half my body. I do have to take it once every 2 weeks for a few days as the narcotics stop my digestive tract, so I take 2 days of severe uncomfort so I can cleanse my system. I am very sensitive to all meds......
But so I have 2 probs. The narcs help for the most the main nerve pain, and then xanax helps the briain funciton issues with weather. IF the barometer related problem is high, I have to take less narcotic as the narcotics make me a bit edgy, so I go down on them to the least i can take and handle the nerve pain.
But also, one last thing, startign in fall, it kicks in often liek clock work when the sun goes down and the temp drops 10 degrees here, [as I lve in a river valley" and will get the symptoms usually only at night and within 3 weeks of the start of fall it lessons and it will start to even out, such as after a few weeks nose sinuses will open around 9 pm.....and stress with go, and then it will kick in when a major front comes in, or barometer goes below 30. But like last night, barometer dropped severely and I am incapacitated and its liek having a fever, confusion and as usual, as the front passed this afternoon, I suddenly felt very well, calm, and normal. ENded as quick as it started...
This has happened for 4 years now and cripples me from mid fall to mid spring and often doesnt bother me during day, and hits hard when seasonal shifts happen and so forth. But, its quite severe. Its hard to get medical help, took me years to get where I am. ANd xanax, I take very little and often have to just use al my mental focus to wait it through and its how i live.
I was born with renal cancer, and had a kidney removed when I was 2 months old, and had chemo and radiation, it may be related may not be. Also had fingers removed from accident a few years ago, But that is not related and have no trauma frm that. Ialso tore my miniscus and am limited to what phsyical activity I can do.
But, other than discovereing its directly related to barometric pressure.....myself nor any doctors I have had have any idea other than, its a Autonomic Dysfunction.
But I'm 41 now, and wrote you as I dont have disability, have only a general practicioner, who is a saintwho helps me for free and I really want to get better find work and start a family someday. This illness gets in the way....
I can't afford any real medical care. But I ask for any advice or insight about this. I may try to ask for more xanax but only on the days its severe as most the time in the day, or outside of bad bad weather, the other meds do well and my mental state is good most the time, I have general well being despite, probaly as I for years did deep meditation and honeslty it is very effective in itself.
BUt if any neurologist can help or phsyician who may have insight, I woudl be thankful as if I coudl get through this, I can focus on livig my life as, it is crippling for 3/4 of the year for the most.
I can relate to a lot of what you're saying because I had compression fractures of three vertebrae in a car wreck when I was young, discs vaporized on impact, and my spine is deformed. Husband also has bad back in a few places from various injuries. Well, whenever a front rolls through (we live in NC, right across the Smokies from you), we're both miserable and depressed, and there is NOTHING to be done for it except wait it out. Just knowing it's the high or low going thru, which pushes down on a person, including the spinal fluid which goes around the brain and around the back, is it any wonder that lousy weather makes a whole lot of people's pains much worse!?!
Now,when you talk about your sensitivity to cold and hot, this can be a sign of your thyroid being off, so your goodly doc can tell a little bit about it from a blood draw, since you cannot afford an endocrinologist, and he can give you some meds to correct the problem. This may help your metabolism, and thus reduce your sensitivity to the temps.
Also, to keep that metabolism running along smoothly, and yet since you have a hard time with activity on account of your knee, then just below this paragraph is a link to a bunch of cardio exercises you can do without straining up your knee... a few I looked at I don't think you can do, but most of the rest are things you should try, eventually doing them three or four times a week to where you break a sweat or at least go at it for 30 minutes daily.
Also, when you have all this sinus trouble in the colder months, I don't know if you've thought of this, so could be you have already taken care of this, but nearly always people who have trouble with their noses drying all out in winter, this is because the furnace kicks on and dries out the air! Around our house, since our last humidifier quit working (we're poor too), I keep a large bowl of water sitting on many of the heat vents in the house. But a humidifier in your sleeping room, in addition to putting water on vents, will really help you most of all. In addition, you should have a plain saline nose spray in your medicine cabinet, squirt that stuff in there every morning and as needed.
Another thing I have noticed is, having a fireplace or an electric fireplace or a propane gas fireplace or gas fireplace is the most DIVINE thing a cold person can have. We don't have one yet, but one of my doc offices has one, and I LOVE sitting near it in a rocker, it's very warming, the warmth sticks with you, and watching the flames is hypnotic, so that feels good, too.
I want to say something about how you're taking your medicine. Hon, I've been taking a number of life medicines for a very long time, as you can imagine, since I tore up my back, too. You SHOULD take your medicines as directed, same stuff, same amount, every day, period. Pour out your pills in a little saucer for the day, and take them all in proper intervals. And if you need more than you are getting, just ask for it from the doc. I also want to say you CAN get a soft collar to wear around your neck when you're up and about in your house, to protect it from hurting so much. Also, husband and I like a heat pad from the drugstore, we keep ours plugged in near where we sit to watch TV, and I often put that thing right in the middle of my back where I tore it up, feels very good.
I am not a neurologist, this is a patient-to-patient forum, but if you want to talk to a doc, as you indicated towards the end of your post, there is an "Ask The Doctor" section at this website, for minimal cost, I think, with a credit card, and you could copy and paste your post and put it over there. Look, you've got a bad back, it has caused a constellation of cascading problems. I'm familiar with them, as I have most of your problems, altho not so much with the cold.
But anyhow, one more thing with this sadness and depression you feel, it is on account of your PAIN and STRESS. These things can be lowered by taking your meds as directed, trying some cardio exercises at that link I gave you, getting your home properly humidified, and understand that you are NOT WELL and it's all because of your neck injury. In other words, give yourself a break! Pain is very distracting and frustrating, and most people who go around with chronic pain are often depressed. Once you recognize why you are depressed, that it's your endles discomfort getting the best of you, it kind of helps the depression.
I think if you will do some of the things I mentioned, you could experience longer periods of pain relief, and thus your depression will lift for longer periods, AND you will sleep better, which yes, lack of sleep can also depress a person. So, let us know if anything I've said helps you as you try them out, and no excuses on the medicine - just try taking them as directed, please, for a couple weeks, and see if you need more of something than you're getting so you can ask for it. I sure hope you can aim to give yourself more comfort for a while, get your life habits in order on this thing, and eventually you will be able to get around better, feel better, and thus perhaps do the family thing you want. Keep us posted!
I like the idea about the Thyroid. I had it checked 2wice about 6months ago, but it may be fluttering liek an old engine ready to go, heh. But I will mention that to the doc.
Today, as last 3 days, barometer dropped below 30, and it gets me anxious, and it usually happens at dusk, but on bad weather days, happens at day time, so have to, turn off tv. Can't have noise, or anything.....it's very disturbing. My skin nerves can't tell cold or hot and are all irritated....the pain doesn't bother me as much as the confusion it gives the brain, jsut...best way to put it, confuses the brain, like sort of out of phase. This wil go when the barom goes back to normal. Just has to be quiet and try to get my mind on output, creativity if I can or put listening to an outword signal......also face feels burned, liek a sun burn. Odd stuff. BUt wont be able to breathe out til the weather passes, or relax. Tense....hyper aware and stressed.....when it goes, its like, heaven. Diffent than the regular 24/7 pain. You are right have to jsut wait it through. The fact that it creates a hyperactueness, and stress makes it, sort doubles it and in sever whether, i have to jsut remind myself it will go with the weather and not call hospital.
I mentioed to doc earlier in year that late fall to mid spring might need an up in meds but make sure he pulls me back in late spring.
It went for 3 weeks to a great extant, and hit 3 days ago hard. That's when I was that for those 3 weeks, i factor was same, barometer above 30...
I do have a stove. Wish I ha ad fire place.
One thing, years ago, I used to meditate for 6 horus a day, and it really balanced my mind...and in a way prepared me for this. I can fall into the moment easily and tolerate alot of stuff I oculdnt. The bad side of this is it effects my mind, so I have to dissasociate with the mentality, the emotional and thought aspect, and stand above it knowing it wil pass and not act on it....and thus get reallly upset beyond what my brain chemistry is making due to the flux in weather. But meditation is an excellant device....I still do it when I can....
I do get down at times, but due to, liek after this last 3 days, I feel vulerable that my mind does its own thing by way of the weather....and its harder to deal with the pain...go above it, as the mind gets myopic for that span of time.....usually only at nights when the temp drops suddenly. SUmmer is gorgeous as it goes away totally.
Onl other thing that can bother me, i don't thik about it is seclusion, but nothing i can do abotu that, so, i let it be, accept it and its good unless its provoked, which I avoid by not asking my fam to visit, cause they are not prone to rural areas and so forth.
The vulerability i get is that I can't control the let go mechanism in the weather changes, and so, its like, makes me vulerable as all out. But it goes...and prob within a day, once this system passes, I can go and watch the river and mountains and paly with the cats, paint or do music.
You are right about the meds. I do have to go off for a day and a half at least or ill get a twisted gut. Oddly the narcs are the least upsetting physiologically, all the others really make me sick, one I thought i was gonna die, and Lyrica, the one that has the least side effects, can spin me into a deep depression, give me tremors and or makes me super hyper and always its like being absolutly drunk. I hate drunk, and stoped drinking or any of that sort, 15 years ago jsut cause, bleck.
I got that from meditation, you get this beauty of clarity or life and self, that beats anything artificial and the weather takes that away for however long......like today.....took my jacket off 5-6 times, turned heat on, then off, can't figure out if its hot or cold.....but door is open know, and coat off, at that gives the least distress....
But thank you, definitely will look into the thyroid again and will wait this beast through knwing in mid spring its gone for good for a season....which is like a gift beyond gifts....and I savor the thought of it.
I am glad to know, it helped to find others had what I have.....it bothered me alot and I didn't find anyone untl I put together it was barometer with the spine....then I found lots of others.
I bless and hope for you all to heal......deeeply so......
ANd again, thank you.
I enjoyed getting feedback from you, allows me to help you better. You did not bring up whether your home has enough humidity in it. Anytime you turn on the heat, it dries the air, except when a rainstorm is coming through. If you already have a humidifier for your home, disregard my advice on that. But if not, you really MUST buy a humidifier for your sleeping room, and put some bowls of water on some of your heat vents. And it goes without saying anytime you fire up the woodstove, put a pan of water on there, it'll give off a nice mist when it gets to boiling. I'm telling you, lack of humidity can wreck your sleep. And if you do use the stove, sit near it when you can.
Now, on the barometer thing, lady, you are going to have to quit looking at that silly barometer! Husband and I only feel SOME fronts in our bones, and lots of older people will talk about how they feel a storm coming in their bones. But not every change in barometer automatically means you're going to have all these wild symptoms! The less you know about that barometer and what it's up to, the better you will feel. But anytime you feel funny, it's indeed good to know that probably a front is coming thru, THAT'S the knowledge that helps, not studying the barometer every day or whatever. It's only SOMEtimes that when a low or high comes thru that it will make you ache. But I personally think your winter trouble mostly comes from lack of humidity in your house.
One of the reasons I told you to stick with your meds is because a lot of this sensitivity to sounds and your mind becoming disconnected with everything and becoming confused, is on account of your nerves are shot from all the discomfort and lack of sleep. This is what Xanax is good for, it helps a person deal with their nerves. But interestingly enough, tranquilizers will sometimes depress people, which is the advantage of opiates, they tend to cheer a person because they feel so much better from their pain.
And ALSO even tho it may be the Lyrica is somehow a trouble-maker for you, it is specifically for nerve pain and agitation, so there's really not much better out there to help you with that. Normally if you stay on a steady dose of the stuff, you'll get past the drowsy, drunk, sleepy part of its side effects, usually after two weeks on it, it'll go away. I might add that I have to assume your doc knew to increase the dose from wherever he started you on, this is supposed to be done in increments over about a month, because the drug is so powerful. I mean, he may have started you out on the optimum dose, so it might take a solid month for you to get used to the side effects. See, I started out with something like 75mg twice daily, and now I'm on a steady 100mg three times daily and have been for years. I do not understand why it revs you up; it's actually the opiates that will do that. Besides, as long as you take the Xanax, it should ease that part of its possible effect.
To prevent an upset tummy, take your pills with a meal or some kind of snack, unless the medicine bottle says not to. Also, drink extra water in general since you have this problem with your intestines, make it a habit every time you go in the bathroom, keep a cup in there and swig down a half or whole glass of water.
I will reiterate that the exercise link I gave you, several benefits come from exercise: It releases tension that settles in the muscles and it helps people relax and sleep better. Also, if you can go for walks OUTSIDE or just BE outside fairly regularly, it'll ground you and you'll feel more sane in the head. I can remember when I was withdrawing from a particularly awful drug, even tho it was the last thing I wanted to do, I'd sometimes go out when it was dark and lay flat out in the grass in the yard and look at the stars. I ALWAYS felt worlds better when I'd come back in. I mean, you don't have to go out in the dark like me... I just said it to prove a point, that being outside can calm a person a lot and improve their outlook.
Whenever you find sounds bothering you, put some earplugs in your ears, some cotton balls torn in half or some tissue will do fine. And that is almost surely from lack of sleep. And I should remind you that deep breathing will knock back your nervous trouble, it lowers the heartrate and thus stress, it acts like a quick meditation, you can do it anytime, anywhere you feel wired.
I apologize for being so bossy this go-around, but I just know some of these things will surely help you, or at least take the edge off all this. Let us know.
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