I'd like to know how you all cope during cold weather? I live on an island, Mauritius, so our winters are no where as bad as those in many other countries. We have tropical winters - no snow or anything. But to me it is still pretty bad, especially since I live in the highest and coldest part of the island (coincidentally, I developed TN after moving here last year). Winter just came in and now I'm really really suffering - I'm even thinking of moving somewhere warmer and drier. I don't know if that seems extreme, but to me it isn't. Moving v/s TN pain.. Hmmm... Moving wins! How do you all manage??
I live in theUS in all places Mi. (ha,) had tn almost 20 yrs. it’s not easy I myself haven’t. been out much in the last 10 yrs. especially when it’s cold windy rainy any air change messes with me bad right now in hotel room with my grandson who is turning 15 and the ac we let get alittle to cold last night I 'm paying for it this morning hope not all day but this is what I do for his birthday he can swim and do his thing I usually just hang out and watch him and it was very warm yesterday and I hurt most of the day so I just never know but I always take a coat hats scarves when its cold and hot (whoops!) have to get him to breakfast before it closes hugs to all
Hi Emily,
I manage with caution. I am basically homebound during winter months. Hats, scarfs whatever i can do to protect my face. At nite I use a heating pad just to keep the cool air that manages to flow thru the house even with heat on. Its difficult Emily especially when the cold is a trigger which it seems as though it is for you.The winters are very long here in New England. No way of getting around it. You can go south but that also can be a trigger. When you win you lose, I found the humid and very hot temperatures effect my TN. I do have to say it was wonderful to be out from the cold. Last year we were out from the cold for a month it was wonderful right after MVD. The second year was a horror show, I spent more time inside in bed. Flying was very difficult for me because of the change in pressure also. I have to say I would redo MVD in a snap, it was wonderful for 6 months. I had my life back even temporary it was awesome. So try the things that you feel are helpful however crazy to someone else. I still sleep every nite with heating pad. Its the only way for me to get to sleep and keep cool breeze off my head. I have not read any articles on how harmful it is. I just put a 2 hour control to shut off. I hope this helps
My Best
Joanne
Emily,
had to look on the global map to see where your country is excuse my ignorance never heard of your island. Maybe your triggers are coming from the damp and cooler air along with changes of barometric pressure with the humidity and rain. Not a doctor but just throwing this out there. When you said you wanted to move to warmer climate was abit confused. Here in New England, USA the winters are very very cold. The temps. can go into single digits or below F. not celcius. So hats , scarfs heating pads may not work for you. You could try heating pad though. Sorry hope you get better.
My Best
Joanne
Hi Emily
Sorry you are suffering with the cold.
Cold is a major trigger for TN. As Joanne said, scarves, hats, heating pads, pocket warmers; whatever we can do to keep the chill away. I sleep with a hot water bottle under my pillow and a cashmere sweater over my head. Going outside can be a ordeal when it is cold, windy or even just chilly, or hot and windy!
Seriously, if you have an opportunity to move to a part of your island that is out of the mountains, go for it. There is no getting around the cold issue.
I find hot really dry weather just as bad. So if you can find warm and humid, that sounds about perfect! Otherwise, bundle up, it helps.
Peace and Happiness
Bellalarke
Thanks Joanne! Actually, I should explain that bit about wanting to move to a warmer part of the country. In spite of being such a tiny island, Mauritius has surprisingly varied climates and temperatures. Think of it in terms of plains and plateaus. So where I live is higher up - the Central Plateau, highest point of the country even. As you go further down, it gets warmer, and once you get off central plateau, you are on the plains which are all the coastal areas where the temperature is quite lovely even in winter,but gets awfully hot in summer. Though at this point I'd rather be too hot than too cold. I actually developed TN six months after moving to this horribly wet and cold plateau. And I am now considering that I should really move into a warmer area. But yes, you are right - humidity is very high here. You are all so very brave to be coping with those awful winters you must have. And here I am sitting with tears streaming down my face since this morning for a tropical winter!
tatto20 said:
Emily,
had to look on the global map to see where your country is excuse my ignorance never heard of your island. Maybe your triggers are coming from the damp and cooler air along with changes of barometric pressure with the humidity and rain. Not a doctor but just throwing this out there. When you said you wanted to move to warmer climate was abit confused. Here in New England, USA the winters are very very cold. The temps. can go into single digits or below F. not celcius. So hats , scarfs heating pads may not work for you. You could try heating pad though. Sorry hope you get better.
My Best
Joanne
Thanks Bellalarke! Now I notice you've both mentioned heating pads.. Not entirely sure where I would get one here.. How effective is the heating pad? So far my hot water bottles (three of them) have failed miserably to keep me safe at night when it is coldest. The past few days have been horrible. I wake up at 3am with awful pain, (though today thankfully did not wake up till 8am), need to get a hot water bottle, make a smoothie so I can take some medication, then back to bed with the hot water bottle.. The pain calms down by 11am-noon when it is warmest and comes back at about 9-10pm when it is cold again.. I cannot keep doing this!
Are you on any meds? Even a warm breeze in Miami Florida can trigger an episode -
cold in the grocery store is the worst for me right now!
Can you get a prescription for lidocaine patches or cream? Heat pad that plugs in - order online?
I would move in addition to all that - if you can!
What caused you to move there? I'm sure more than 2 of us have to look on a map for you! Where were you living before?
Keep Posting!
Hi Emily,
each and everyone of us have various triggers that precipitate an attack or attacks. Alot og times there is absolutely nothing that triggers the attacks of pain. Thats the bizarre behavior of TN. Even with all that we try to do in preventing this from happeneing it can ultimately make no difference. Its good though that we can throw suggestions out there that may help in diminshing these horrific and beastly attacks. As kC said try online for a heating pad, the plugs maybe different for your sockets ,so you would need to check on that too. If you can make the move great, whatever you think may be triggering those terrible attacks of pain. I said to my hubby wish I could move to Florida for 6 months to get out from the cold. I do not think that will help. We are having very warm and balmy weather have the AC on but need to be careful not to make it too cool. Actually I still had the heat on my head LOL. You certainly chase your tail with this disorder. Wish you the best Emily. Maybe talk to your doc about increasing dosage on your medication anything is worth the try.
My Best
Joannexo
Hi Emily
I really like trying to imagine you on your island. This evening on mine the north wind has come up and the thousands of wisteria flowers are swooning. The rain is starting and so pain levels are escalating too…
All good points made by Joanne. Especially the “TN chasing its tail” line.
Do you feel comfortable enough at work to try to explain your condition somewhat? So you don’t have to hide either a hot water bottle or heating pad?
Thanks all :) I really appreciate the concern. Well, here's how it stands with me - the pain has calmed down over the last two days, although I have been back to see my doctor yesterday. He wants a second opinion on what other options to give me, so he has referred me to the hospital's neurosurgeon, who I will be seeing this afternoon.
Well, Bellalarke, I work with a very small team in my office, who are thankfully wonderful understanding people. I do take my hot water bottle to work and use it as and when needed. Today, I am sitting in my office with a beret on - to keep my head warm, but also because of a horrendous case of 'bad hair day'.
To answer your question Kc Dancer, I moved because my previous landlord decided he wanted his house back.Yes actually, moving would be perfectly possible and plausible. I now live in a town called Curepipe - reputation for being the coldest part of the country (bear in mind that I did not have TN before moving there!). I previously lived in a town called Quatre Bornes, which while not being so far from Curepipe is much warmer. As I said, as you get off the highlands and move to lower grounds it gets warmer. I know this must be hard to imagine as Mauritius is so teeny tiny! It's hard to think there are so many temperatures and climates in there! It's interesting to think that you have now all discovered Mauritius :)
Joanne, I am sorry about your terrible winters. Having so much pain from tropical winter, I can only begin to imagine what kind of suffering you must endure :(
Hi Everyone,
Just the thought of cold weather makes me tense. Cold weather means pain. I use hats, scarves, etc, etc to keep the cold off my face. Even watching games I have to bundle up on the stand, especially if it is windy. The cold moving air presents a bigger challenge.
However, even warm weather is challenging. With the heat comes the air conditioning, so you go from really warm to cold. The cold air inside a restaurant or store can play havoc with your face. No one understands if you request a place away from the the fans or air-conditioning.
My TN is so sensitivee, I cannot drink anything cold. I cannot eat anything cold such as yoghurt or ice-cream because I will have major pain. One of my biggest regrets about TN is that I had to give up ice-cream (my favorite double fudge chocolate).
I sleep with slightly warmed towels on my face at night to avoid getting cold. If I allow this face to get cold, I know I will pay for it the next day with awful pain.
Best Wishes,
CH
Oh Emily, I nearly fell off my chair when I read the doctor thinks I need a second opinion so I’m seeing a neurosurgeon this afternoon! I’ve been waiting for 15 months! Oh my…
Please let us know what he has to say.
I wear berets and hats all the time, even in the house, sometimes a fleece hat under a beret for extra insulation. I’ve just ordered some near head gear from a company called BUFF. They have a location in Spain, I think. I’ll let you know how the stuff works out…unless, of course, you get whipped in for an MVD tomorrow:-)
Yes, we’re all learning about Mauritius. It’s fun. There was a time a decade ago I thought I might sail there with some friends and hang around for six months or so. That s not going to happen now so I’m happy to hear something from there, but of course, sad that you have TN.
Please keep us posted!
Now it's my turn to be puzzled... why have you had to wait 15 months? :o That seems unthinkable here, or maybe I say that because it's a small country. Obviously the first step is I'm having an MRI on Thursday (thankfully my insurance has kicked in properly to cover this one or I would not have been able to pay for it.) He also increased my Tegretol to 600mg so that's 200mg x3.
Then we shall see! He seems optimistic, which is a good thing I guess! My pain has considerably subsided since yesterday. Fingers crossed, this may be my first pain free day in weeks.
Oh I just ordered a balaclava online (obviously, now way I'd get a ski mask or anything here). I think it may have arrived in the post. Can't wait! I'll try not to look like I'm going to rob a bank though. I may be the only one walking around with a balaclava one hehehe.
I hope one day you are well enough to be able to travel and can make it to Mauritius. It would be I think a well deserved reward for all you have been through.
Oh, and still waiting…
Good to hear you’ve had a good day. And that you’ve got the balaclava on hand. If you check out the BUFF site you’ll see some very pretty head and face gear too. I think it’s good to be optimistic that the 600 will work for you, especially now that you’re aware of your triggers, etc.
let us know about the MRI.
Yes, I hope to still make it to Mauritius some day:-)
I bundle up and wear my toboggan hat, AND my jacket hood and sometimes a scarf wrapped around to keep the wind away.
I had to cancel the MRI for now, because the insurance company is refusing to pay for it.. I have insurance through work, and in despair asked my superiors if they could help. They asked if I could postpone it for a few days, while they tried to find a solution for it. If all goes well I should be able to reschedule soon. I really couldn't afford to pay for it on my own.
Oh dear, that’s distressing, but don’t worry too much about it though while your company is getting it sorted. MRI mostly rules out conditions, it doesn’t necessarily confirm TN. Stay warm and keep to your routine over the next few days. Let us know when it’s coming up.