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SCOOTER1NANNY's Photo SCOOTER1NANNY Posts: 827
7/4/08 4:03 P

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It is so nice to hear that you have a wonderful nurologist because I feel the same about my neurologist. I live in PA. I hope everyone has a safe and happy holiday.

BETHAW75's Photo BETHAW75 Posts: 179
7/4/08 1:31 A

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Well, I got 4 1/2 last night, but was able to take a two hour nap today around 4, thankfully. If it wasn't for my naps I'd be in BIG trouble! The weather bothers me a lot... I call myself a human barometer. When I talked to my neurologist about it, he told me it's because when the barometric pressure changes, the water in our bodies shift and those of us with damage in our bodies tend to notice the increased pressure, whereas a "normal" person doesn't. It's also why people with arthritis know when it's going to rain, and people tend to have more migraines when the weather changes.

I absolutely love my neurologist, he's pretty understanding compared to the first one I had. He was horrible, talked down to me all the time like I was too stupid to know what I was talking about, even though I live in my body and do my research online about things before making any decisions. He was from a muslim country, and felt that since I was a woman I was beneath him and too stupid to know anything or make any decisions on my own. I put up with him for a while, but finally switched after I had to force him to do a spinal tap to check for MS, which TN can be a sign of when it shows up in people my age. My neurosurgeon was in complete shock that he hadn't done one before my gamma knife surgery, but he wanted to just act like I was stupid for even
considering it.

I haven't done any of the naturapathic medicines to be honest, because most of them aren't suggested. The only one that is, other than vitamins and minerals, is accupunture, and all the people in my tn support group that have tried it actually ended up worse off than before, and I'm terrified to have that happen again to me. I do take some supplements, but can't do what is most suggest, and that's to take B supplements. I found out the hard way that I'm allergic to them. Every kind that I tried, from the pills to the sublingual to the liquid all would come back up the minute they hit my stomach, so I had to give away about $50 or $60 worth of supplements. It was very frustrating, but at least I found out before it was too late. My doctor did make me stop taking vitamin D though, because he said it can be counterproductive, and I'll take his word on it!

I am in the states... I live in Missouri, which can be a very beautiful state most of the time. Right now we have gotten so much rain though, that we are having trouble with flooding and most of the farmers have lost all their crops for the year. It's going to be a rough year this year. I'm not married, and am kinda afraid that I will never get married sometimes. My last boyfriend and I are really good friends, and actually kinda dating again now... but it really bothers him to see me in pain. I don't know how things will end up working out, but I'm trying to take everything one day at a time. We were together for five years, thru some really rough times, and then he couldn't handle seeing me hurt every day and not understanding why the doctors couldn't just fix everything.

I think it really frustrated him when I had the surgery and ended up worse off afterwards... I started off with one damaged cranial nerve and now have three or four! The doctors can't make up their minds for sure how many, and they don't want to say it's from the surgery, but it is a possibility and I knew it going it... but it's a 1% chance. I just happen to be that 1% apparently.

I try and look at the positives of it though, strange as that might sound. I know that sounds weird, but I'm a better person than I was before tn hit. I am much more patient, and am more willing to listen to other people's problems than before. I very rarely gets upset in traffic now, where before I was always tense and full of road rage. I am less judgemental now too, on the whole, because you never can tell what someone is fighting inside.

Hope everyone is doing alright, taking care and staying cool and dry!

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CARICAT_'s Photo CARICAT_ Posts: 261
7/3/08 3:19 P

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I got less than 4 hours =( the phone rang and rang and then the cats started getting rowdy (I have 3) I finally gave up, but I'm too tired to concentrate on much of anything.

Does weather affect your condition a lot? I've noticed that barometric pressure seems to really affect my headaches and sometimes, how well I sleep.

I'm really glad to hear you don't feel suicide is an option...but it sucks that you're in so much pain all the time. Have you tried any alternative therapies to help? Naturopathic Medicine or my fav, Accupressure/Accupuncture. When I had Shingles, the accupuncture my doctor did was a life saver! Killed like anything while he overstimulated the nerves involved, but then the pain was very dulled for about a week after.

I've found some ways that I can eat an incredible amount of food for lower calories... but it tends to be pretty expensive! (at least here!) I'll have a "meal" of 1 1/2 head romaine lettuce, 20 baby carrots, 1/2 english cucumber, 1 medium tomato and 1/2 cup low-fat cottage cheese... that's a lotta food! Then for another meal, I'll saute 1/2 an onion, 1 cup fresh mushrooms and 2tsp herb and garlic cream cheese and a small bit of ham, then add I'll have 5 egg whites + 1 whole egg and scramble everything up... again a ton of food, but under 350 cal and with a LOT of protein.
It's very hard not to eat with the hunger caused by drugs... and I've been told that appetite suppressants do NOTHING to help =(

I burn myself a lot too... one thing I've found that you might want to try... when yer burned, (after you've completely cooled the burn by running it under cold water at least 15 mins!) try applying some straight pure Lavender Essential Oil. I know everything says not to put oil on a burn, but it's not a real oil, and, once the cut is cooled, there's not the same problem with keeping heat in anyways. The lavender is known to soothe nerves on the top layers of skin...it's not instant, takes 4 hours or overnight to work, but by the next day, the ouchie is usually gone. Note: do NOT apply to a blister or broken skin!

Are you in the states? I was on disability in Ontario, and I was wondering how it compared with what they do in the states. Note I say "was"... when I got married, they said my husband made too much $, and cut us off. what a crock. I believe we're actually considered at, or just above the poverty line... tells ya something about how the government views us!

CariCat

BLC 18, Sapphire Sweethearts - lost 11.3lbs, 8.75"
BLC 20, Sparkling Sapphires - lost 8.5lbs
BLC 23, ?? - goal 8 lbs


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BETHAW75's Photo BETHAW75 Posts: 179
7/3/08 12:44 P

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Feel free to call me Beth, that's what I'm used to answering to anyway! lol I am kinda disappointed, I had planned on going to my brother and his wife's so I could see my niece today, but my face is absolutely killing me, thanks to a monster storm we had come in yesterday, and I didn't get much sleep last night myself. I ended up getting about four and a half hours, and that's WITH all the meds I'm on. emoticon I have days when the pain isn't too horrible, constant, but I've lived with it long enough to be able to push thru it enough to survive it. TN is called "the suicide disease" my all the doctors and the articles you will find on it, because it gets progressively worse and more painful, but I refuse to give in to that urge like so many others. I'm in a few different support groups to help others, because I find that helping others helps me feel better about what I live with... I am 33 years old right now... or as I like to say, I'm 31 with two years experience! lol

I've been eating a lot lately myself, but I've been trying to make sure that most what I'm eating is shredded lettuce and green peppers, that kind of thing, just because I am afraid to gain back all the weight I've worked so hard to get rid of. I was so miserable when I was heavier, and really would like to feel better about my body. I have enough issues about looking in the mirror and seeing a lop-sided face, thanks to the damaged nerves, I don't want to be HEAVY and lop-sided! lol

I'm scared to even cut my hair, because I'm really sensitive to touch, and vibrations, so they usually hurt me more than they realize, by accidentally touching my face... and man hurts! I also have some balance issues, not sure if it's from the damaged cranial nerves, or because of the cocktail of anti-seizure meds I take to keep the pain at a liveable level.

I have to take a nap every day, or I am so stupid I end up hurting myself one way or another. I have two burns on my right wrist right now just from cooking... one of them is even from a microwave dinner!!! I didn't think I'd ever be able to hurt myself cooking in the microwave, but I've proved myself wrong this week! lol Thank goodness I didn't have to fight too hard for my disability, because I don't know if I could have kept my head together long enough to go thru the appeal process... I have trouble reading ANY kind of instructions now!

Thanks for replying, nice to know I'm not alone here on sparkspeople!

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CARICAT_'s Photo CARICAT_ Posts: 261
7/3/08 5:23 A

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Hi Beth and welcome! (ok if I call ya that? =)

sounds like a nasty condition....good thing it's rare! I'm suffering thru a nasty headache right now, and I don't know what I'd do if the pain was constant. I used to have constant pain, but that was years ago now.. now I wouldn't be able to cope!

It sounds like you're about my age... I just turned 32.
I was diagnosed with a brain tumour and operated on, 1 month before my 13th birthday - what a way to celebrate becoming a teenager eh!
I've never had gamma knife, and from what I've heard, I probable am not the best candidate for it... my tumour's too large. well, at least, 1 of them is. It just regrew for the 8th time, and I had a fairly standard radiation to treat it this time... left me with these headaches and nasty fatigue - not to mention, more than a little hair loss. about 1/2 to 2/3 of my head is bald now... not a nice feeling believe me!

Anyways, must get to bed shortly...yes, I've turned into a nighthawk... The drug I'm on to control swelling caused by the radiation, Decadron (dexamethasone) causes uncontrollable hunger, (I've gained 20lbs in the 3 weeks I've been on it so I totally understand your problem... it's driving me nuts I'm so hungry, but I just can't let myself eat...much. =) and makes it difficult to sleep! But I'm gonna go try now. =)

Sorry so disjointed in this message... I swear, I'm usually more with-it... it's the fatigue and swelling and the headache...really it is hehe ttyl

CariCat

BLC 18, Sapphire Sweethearts - lost 11.3lbs, 8.75"
BLC 20, Sparkling Sapphires - lost 8.5lbs
BLC 23, ?? - goal 8 lbs


 Pounds lost: 2.0 
0
32.5
65
97.5
130
BETHAW75's Photo BETHAW75 Posts: 179
7/3/08 1:35 A

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Hi there, I'm new here... I've been working on trying to lose weight for the last three or four years now, but working really hard at it for the last year and a half. I have a fairly rare neurological condition called trigeminal neuralgia... it's a disorder of the 5th cranial nerve. It causes a lot of pain, and normally hits people in their 50's and 60's. I was diagnosed at the age of 28, only about three or four days after I was hit with it full force. I suffer from the atypical form, meaning my pain doesn't ever go away. I have been on a lot of different anti-seizure medicines, and one of the was Lyrica. It caused me to gain a lot of weight... I actually gained around 50 lbs in the first three months I was on it. I'm only 5 foot 2 1/2 inches tall, and ended up being almost 220 lbs by the time my neurologist pulled me off of it. Before finding sparkpeople, I went from there down to 172... and in the two weeks I've been using sparkpeople I've been able to lose another 5 lbs. I fight major problems with fatigue, due to the meds, but have been working really hard at watching my food intake in order to try and lose the weight and get back to the way I used to be. Right now I'm almost down to the weight I was before the tn hit, and I'd like to get down to smaller than that, ideally. I have trouble sometimes with sticking to a strict diet though, because the tn causes me to have trouble eating and I have to eat what I can... usually it means I'm eating mashed potatoes, mushed bananas, any kind of soft food I can get in my mouth with a baby spoon. I also have damage to three other cranial nerves, thanks to gamma knife surgery done on August 2, 2005 to try and reduce the trigeminal neuralgia pain. I work really hard on facing every day as a challenge, but some days are much easier than others. Anyway, wanted to drop in and say hello!

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