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Kaya579

Why am I always cold?

I am on Trileptal and Topomax. And i'm always freezing. Even when i'm warm to the touch, i'm shivering inside. I know the meds thin out the blood, but this is crazy. Is the hormonal seizures and the screwed up hormones every single month? Is it the medications? Wow. The house is warm and the blankets are on me. Help. I'm frozen. -Kelly

Comments

Re: Why am I always cold?

Ahhh, finally made it back to Vegas! Right now it's around 10:30 PST and it's close to 70 degrees outside. I've been feeling much better now that I'm back where it's warm and no longer living where it's cold or humid all the time. The weather makes a big difference for me. I love being warm and HATE being cold. Hopefully now, I'll be able to control my seizures better and try to have some kind of life. I'm on Disability, and I'm not sure how much I'm allowed to make or even if I can work. I just know I need the money! Either way, it feels good to be warm again.

Re: Why am I always cold?

hi,  this is a shot in the dark.  I have had the bone cold feeling from time to time.  the neuro thought is was cause by seizure activity close to the hypothalmus.  part of the tempature regulatory system of the body and the hormonal effect on seizure activity has the connection.  the changes in the hormones may make you more prone to have seizures in that area.  The thing i did that had the best effect, was a hot shower, and a warm bed. lots of blankets, and go to sleep for a while.  it for me was bone crushing cold, and it could be 90 degrees F.   An side note is that when i had the vns  put in the what i call "cold seizure" for the most part went away as a normal.  if it start to occur, i activate the device to increase the power and the cold is gone.  Some of the AEDs can cause the problem as a side effect. I was and still am on keppra. It was one of the things the neuro added.  when they went away he looked confused, but said it must have had something to do with the seizures.  Now for the politcal part.  the best people to indicate seizure research are people with epilepsy.  the doctors should not be saying it is not. and looking more at could it be.  Many of the people i have contact with have problems with neuros, listening to problems.  This i think is one of the main problems for misdiagnosis.  That will end the political address.  I hope the information helps.   rikk

Re: Why am I always cold?

hi, again.  to connect to the cold problem i had.  I actually took my tempature, and the tempature actually dropped by 4 degrees in a period of 15 minutes.  That was one of the other points that put it more into a seizure type.  Rikk

Re: Why am I always cold?

Wow..explains everything.I am recently a new Topamax user and am always cold as well.

And being a Finnish American we pride ourselves on loving the cold!

So what is up with my being cold sitting in front of a roaring fire with a hat and socks and sweats on in a blanket?

And...I am drinking hot tea and just took a hot shower!!!!

I am usually someone who is always hot too. Menopause from a hysterectomy at age 26 and I am only 37. So I start taking this medication and now my temp has swung the other way.

I also have low blood pressure and low body temperature..always have. Some docs tell me the normal "average" body temp is not 98.6 others say it is closer to that. I am usually at 97.1 or lower for temp.

Weird goings on...maybe people living with epilepsy have a tie to temperatures and blood pressure as well without the medication?

Stacey:)

Re: Why am I always cold?

I KNOW WHAT IT IS LIKE TO FEEL THE COLDNESS IN EVERY LITTLE THING.  DON,T TALK ABOUT BARE FEET AND BARE HANDS AND THAT CAN BE AFTER TAKING SOCKS, SHOES AND GARDEN GLOVES.  IT DOESN'T GET TO COLD DOWN HERE ANY MORE I LIVE IN LOUISIANA. I NEED NOT SAY WHAT TOWN. I WILL BUT I JUST WONDER WHO COULD OR WHO WHO WOULD TRY TO FIND A LITTLE TOWN OF LABADIEVILLE, LOUISIANA,70372,USA.  ITS IN BETWEEN A SMALL TOWN CALLED NAPOLEONVILLE AND A LARGER TOWN CALLED THIBODAUX.  THEY ARE LINED ALONG THE BAYOU GOING TOWARDS THE MISSISSIPPI RIVER GOINING OUT TO THE GULF.  ITS ALL WAY DOWN HERE.  THERE ARE A LOT OF HAUNTED PLACES HERE.  SOME I'VVE BEEN AND STAYED AND SEEN SOME I'VE JUST HEARD.  BUT THIS IS THE PLACE TO BE HAUNTED. (NOT MY HOUSE- BUT MOST OF THESE GROUNDS ALONG THE BAYOUS AND RIVERS.  DON'T TALK ABOUT THESE HUGE MANSIONS.  WHERE I WENT TO JUNIOR HIGH THERE WAS A CHURCH, LIKE A USED THE TERM WAS.  THE CHURCH WAS SO OLD AND NO ONECOULD BELIEVE HOW IT WITH STOLD THE CIVIL WAR AND WAS USED AS MASH STASTION AND A JAIL.  NOW NOT A BLOCK AWAY STAYS COURT HOUSE WE ARE STILL USING THAT SAME COURT HOUSE TODAY.  THEY HAD TO DO A LITTLE PAINTING AND WIRE FIXING BUT IT LOOKS LIKE ONE YOU SEE ON TV. TALL CEILINGS, HUHGE HANGING FANS YOU PRAY DON'T FALL.  THE SEATS ARE ONE PER LINE AND THEY ARE THE STAINED WOOD.  THE DOORS YOU HAVE TO USE WITH MAKE THE LOUDEST SOUND. THEN WHEN ITS YOUR TURN TO GO UP TO TALK THE LITTLE DOORS MAKE NOISE.  I KNOW I'M TALKNG ALOT A BOUT THIS LITTLE TOWN OF NAPOLONVILLE AND ITS LITTLE COURT ROOM, BUT IT HAS MADE SO MUST TROUBLE IN MY LIFE.  BUT THINK WE'RE IN THE SWAN OF EVILNESS AND ITS WHO PLAYS RIGHT.  HE'S JUST THROWING THE BALL AROUND B/C HE CAN'T BEAT ME AND HE NEEDS SOMETHING.  BUT FOR THE COLD I KNOW THE FEELING.

Re: Why am I always cold?

You could try do more movement to get the blood flowing to your extremities. Gardening is a great way of having some exercise and the roses are just a pleasure to attend to. This way you will move your arms, legs and fingers more and improve circulation. Even more, it will get your mid off the cold sensation that you have.

Re: Why am I always cold?

I'm a male 51 on topirmate and I freeze all the time. Of course being in Mich doesn't help. I know my feet are always cold. Sometimes they get so cold they hurt. I wear heated hunting socks and a hat in the house.  People think I'm nuts but I can park my tooties on a heating pad  on for hours and still feel ice cold inside.

I have artrithis and that adds to my discomfort. Just to have the hot sun beating down on my back would feel so good now. Man I need to hit the lottery....x

Re: Why am I always cold?

I'm always cold.   I live in the Algarve, and I'll be in a jumper in the summer!!!I'm on Keppra, and I've heard that it's a side-effect of the meds.   But...my BP is about normal (a little on the high side 140/85), normal chol. platlets etc etc all ok - very high haemoglobin though...doc says that's having sluggish blood (but circulation is fine????) - this was before the Keppra.

 Still same now, but I just feel freezing all the time - more so in fact - my friends are understanding...but think I'm mad (in a good way)...Balmy summer evening, 32ºC, everyone else is in shorts and t shirts, and im there in my jeans shirt and quite probably a light jumper/jacket.

Great ad for living in the sun hey!!!

Re: Why am I always cold?

hi

i also know what your going though. i've been having epilepsy a little over 20years, and yes im cold all of the time, i talking every season. my family make fun of me because it can be 75degrees and im cold. so one of my family members told me i need to start taking iron pills to build up my blood...but do that work? then one doctor tells me, i just immentek.?so i really dont know whats going on with body.

you stated the you are taking 'trileptal' i do too, and four more meds...so i guess all the meds are thining out our blood. 'but then again i really cant say'.

Re: Why am I always cold?

MY BLOOD PRESSURE STARTED RUNNING SO EXTREMELY LOW, I HAD TO START TAKING PRESCRIBED MAGNESIUM OXIDE 1600 MG A DAY. I DON'T KNOW IF THAT HAD ANYTHING TO DO WITH THE SEIZURES, BUT YOU MIGHT CHECK WITH YOUR DOC. ALSO, HAVE YOU HAD YOUR THYROID CHECKED? THAT CAN MAKE YOU SO COLD THERE IS NOTHING BUT HORMONE REPLACEMENT THAT CAN MAKE THAT GO AWAY. SINCE SO MANY CRAZY THINGS ARE HAPPENING WITH MY BODY, I CAN'T REALLY PIN DOWN WHY MY FEET AND ANKLES ARE ALWAYS REALLY COLD AND I CAN'T EVEN FEEL IT. I ALSO CAN'T SAY IF MY THYROID IS CAUSING THE CHILLS AND MAKING MY FEET SO COLD AT NIGHT IN BED, THAT I CAN'T SLEEP. GUESS WHAT I AM SAYING IS THAT THERE COULD BE A VARIETY OF THINGS MAKING YOU COLD, AND A THOROUGH (SP?) EXAM WITH BLOOD WORK MAY BE IN ORDER. SAYING THAT, I HAVE BEEN COLD ALL MY LIFE, WHICH IS WHY I LIVE IN THE DESERT OF AZ. WHERE THE TEMPS GENERALLY ARE GREAT! BUT I STILL KEEP ON FREEZING.....UGH. HAVE YOU TALKED TO YOU DOC? JAN  

Re: Why am I always cold?

I don't know where to begin about being cold. My E began when when I lived out west, and I'm pretty sure it had alot to do with not eating right. I'm not sure that's how it started, but that's when it showed it's ugly face. I lived in the southern NV desert, and for reasons I allowed to get out of my control, I wound up back in NE PA. (I don't think I need to say anything more about cold.) I worked outside in NV most of the day, and loved the sunshine and heat. The times I did go inside, the AC was like going in a walk-in cooler. There were times I would put a jacket on when I went inside! I even slept on a heated waterbed at home, and wore 'jammies' when I went to bed. The cold and humidity has been a shock to my system, and my seizure frequency has more than tripled. I have friends and family that live out there, and have told me I can stay with them until I get on my feet if and when I want to move back out. I was recently put on disability, and once I can get a few things straightened out, I'm moving back out, or I'd rather die than spend the rest of my life here. If anyone i.e. friends, family, Dr's, ever try to tell me that environment doesn't make a difference, I let them know, they have never lived with Epilepsy and experienced one extreme to the other. I think my Dr finally understands now that he has my records from out west. Any time a seizure did wind me up in the hospital, it shows in my records where I was constantly asking for extra blankets or to have the heat turned up. I wasn't able to bring my waterbed, and sleep with a heating pad wrapped around my feet, and 3 layers of clothing. I hate cold, and if I could afford to move away from it and spend the rest of my life away from it, I'd leave now. Yes cold does effect Epilepsy, I'm living proof. I take Lamictal and Dilantin, and never had level problems or side effects out there.      

Re: Why am I always cold?

i am on lamictal and keppra and estrogen cuz of hysterectomy in my mid 20s, i am now aproaching 50. no my bp runs 115/65. i dont know if its the meds or not. but i use to be hot natured for the 20 years i was on tegretol from 25 till 45 when my sieures went out of control, now i am cold constantly and after a tonic clonic siezure i am freezing. i just had a vns implanted last week, will be turned on next week, since i am still have lots of seizures. starting beginning of march we are changing the keppra to topamax and we will see if the keppra is the culprit. here's to warming up!!!!!

banffgirl

Re: Why am I always cold?

wll now i know why my son constanty turns up the heating stating he is feezing when we are not. thanks

Re: Why am I always cold?

I am permanently cold, in fact its a standing joke when I visit my brothers I always wear two pairs of socks and am wrapped in a blanket. Its like you can't get warm. I was noticeably colder on meds. I always have the shower super hot like other people think it would burn, but its like my temperature is up the creak. I do have low blood pressure and have just been told I have a circulation  disorder known as Raynaurds Disease another thing to add to the list! :)

Re: Why am I always cold?

I have Raynaud's as well.  I like to do a lot of whitewater boating all year round (including winter and I live in Massachusetts) so it can be a problem.

Mittens work better than gloves.  Looser is better than tight for shoes and circulation.  Direct heat sources really help warm things up--battery socks help, and hand warmers might be a good thing to keep in your pockets.  Caffeine constricts capillaries so cutting back can be helpful.  Some people are prescribed a heart medication like Procardia that helps, but I haven't asked my doctor about that yet.

If it's primary Raynaud's (not caused by something else like Lupus or Rheumatoid Arthritis), it's very common and more uncomfortable and annoying than dangerous.

I've had it way longer than I've been on Keppra, so I know it's not from that.

Deb

Re: Why am I always cold?

Deb, thats really helpful. The doctor only said to me last week so its all quite new but explains a few things like when my toes go blue. I hope it is just raynards. I tried keppra but it didn't agree with me. I think I should cut back on the caffeine. Have been reading about a gluten free diet to help with redcuing seizures so I might give that a go next. best wishes and many thanks bex

Re: Why am I always cold?

HEY SERUZIES, I CAN'T BELIEVE THAT I REMEMBER THIS, BUT I DO. THAT IN ITSELF IS AMAZING! I AM GLAD YOU WILL BE ABLE TO GO BACK TO NEVADA, FROM ONE WHO LIVES IN THE DESERT IN AZ. I REALLY DO HATE COLD. GOOD LUCK AND GREAT NEWS! JAN  

Re: Why am I always cold?

HA! You know what I'm talking about, anyone that deals with E on a daily basis, and is cold all the time, doesn't know what living in a HOT, dry climate does for someone with Epilepsy. I'm willing to put money on a study of people with Epilepsy who have problems being cold all the time in a wet, humid climate to people living in a warm, dry climate. My records from NV proved it to my Neuro here, and when I'm ready to move back out there, he sees no problem with it and in fact, advises it. Living out west isn't a cheap date, and whenever that comes up in a conversation, my answer is always, "It's worth it."

Re: Why am I always cold?

Wow I seriousl thought I was the only one going through the extreme feelings of cold.  I got to the place I could not stand no type of cold at all. I cant even stand Aircondiner after spending 4 years being cold I packed my stuff and moved to arizona the hottest place I could think of cause I could not take it any more and I'm still cold! I sleep under 12 blankets and my friends think I'm crazy! They like did you not notice its 90 outside I'm like did you not notice the air is on inside?

Re: Why am I always cold?

Thats exactly how I felt when I reached az and the heat

Re: Why am I always cold?

It's the meds ur on. What is ur regular body tempeture? Mine runs about 95.6 and that's my regular temp. I stay cold all the time. my blood pressure runs ok for some one who smokes. just pay attetion to what meds u r taking.

Re: Why am I always cold?

Gosh, I have been freezing for years. But I would never think it was my meds. How long have you been cold?
I think it is just our bodies. No matter how worm it is in the house, I am always cold. I take a shower and it helps. Especially when I cant seem to get warm and I am going to bed.

take care and keep warm :)
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: Why am I always cold?

Have you talked to your neuro about this? My son was often colder on Dilantin, Depakote he was always sweating, Zonegran he is back to feeling a bit colder. Seems harder for him to fight any kind of chill after seizures too. Are you controlled or having seizures?

I hope you can get answers! So miserable to always feel cold even when you are bundled up.

Maybe the neuro can adjust a dose or something?

Re: Re: Why am I always cold?

I have hormonal seizures every month and I have them for a week at a time. I'm always freezing after a seizure and even in the summer, if i'm in the house or in the shade- i'm chilly. I almost always have a sweatshirt on and i'm not a person fond of winter, that's for sure. I would love to move to Jamaica. The medicine doses have nothing to do with the chill. I've been on different medicines and different doses, but i've always been a bit chilly. For the past 4 to 5 years now. I've been on medicines for 10 years total now, too. Joy. :) -Kelly

Re: Re: Re: Why am I always cold?

Everyone who can - women, tell me about your menopausal seizures, Has anyone increased progesterone or estrogen to help relieve it? What hav eyou done?

Re: Why am I always cold?

Gosh Kelly !! I'm in the same boat with you. I always seem to be freezing these days! I'm on Keppra, and I don't think it's my meds that are making me this way. During the summer, I'm always burning up, even with the a/c at full blast !

Talk to your neuro, and see if it could be a side effect.

((( hugs ))),
Barbie

***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Re: Why am I always cold?

With me, it's my hands and feet. They stay like blocks of ice...even with my hot flashes. My hands I can tolerate the coldness, but it can be very painful for my feet. I've always considered it to be poor circulation. I'd be more than willing to blame it on the Depakote though. Smiles!

-Spiz

Re: Why am I always cold?

I'm on both Keppra & Depakote & yet i'm always cold. the only thime i seem to warm up is when i'm near a fire or a heater or if it's in the 90s outside. Let me put it this way i like it 2 be @ 72 degrees f all year around and yet when it is 74 inside my home i feel like it in the 40s or 30s and don't know y

Re: Why am I always cold?

Hi Kelly. Names Linda and I thought I would let you know I have the same problem. I learned that it was from my low blood pressure. Do you know yours? If not it may be worth having it checked and talking to doc about. Low blood pressure can be dangerous aswell as high blood pressure.Mine droped so low after having a hysterectomy that I had 24 hour monitoring with nurse in room at all times and had to lay flat and they took my meds away.Hope I don't scare you but it is something to have checked.Meds can cause low blood pressure aswell.When I was off meds for veeg my pressure was normal for the first time. Hope this helps. Smiles to you Linda.

Re: Re: Why am I always cold?

My name is Mike, I`ve had epilepsy for 42 years, I take Dilantin.
May hands an feet sometimes feel frozen. Recently I found that it was because of low blood pressure and high colesterol, it could be from loss of appitite and your not eating enough. One remedy I found was to eat oranges with vitiman C, also salt and sugar will bring your blood preesure up

Re: Why am I always cold?

Hi there,
My firgers and toes are freezing in winter and just a bit better in the summer and living in the U.K. summer isn't much warmer than winter. My B.P. is spot on though and the problem only really began when i started on Keppra. Mind you i'll keep the gloves on as long as I stay seizure free (3 years now).
Andy.

Re: Why am I always cold?

Think of your body as a radiator that needs a constant supply of heated liquid i.e your blood to keep it at the right temprature.  If you have low blood pressure the radiator will not be giving out as much heat as when it's running at the right pressure.  The first signs of this is losing heat from your hands and feet.  If your pressure is to high then the radiator is getting to hot which can sweats.  Check with your doctor or buy a simple blood pressure measurer they don't cost much. There are simple Medications that might cure this problem but it will be a trial and error procedure and of course always check with your doctor before taking such medications.

I hope this has answed your question Plopdan

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