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I used to get this all the time and it was one of, if not my most bothersome symptom. Nothing to do but lie down and put cool cloths on my head, neck to make it subside a little. Of course, then I would sometimes go into a fit of shiverring and teeth chattering. Also used these things - Cool-danas - that I got at the sporting goods store - bandanas that you wet/freeze that you wear around your head/neck, especially in summer. I also sometimes put cool, wet teabags over my eyes and put pressure on them. That used to be a quick fix for puffy eyes that I'd used before and remembered that it felt soothing so I tried it for the burning eyes symptom and it worked.

Thanks, everyone. It appears that this is something I am just going to have to deal with and hope that it will go away quickly. I'm with you, though, when I do put the cold pack on my head, the rest of my body gets very cold. You can't win!

This sounds similar to the flushing episodes I get when under stress or when I talk too much. Cool cloths to my forehead help, but when it gets bad I wrap ice packs around my head . For me, this has to do with excessive sympathetic activation as my BP goes up and I get chest pain too. I have burning skin all of the time due to neuropathy on my hands, feet, face, and mouth. But my eyes burn too sometimes.

I do use cold washcloths or ice packs but it doesn't seem to work. I don't get chest pain and haven't checked my BP. Is there nothing else we can do? It's a constant thing with me lately and it's very annoying. Have the doctors given you an explanation or any meds that would help this?

I love the Spoon Theory! It really helped me. Sorry you are having brain fog. I know how that one goes!

I am so thankful I can bathe now without too many symptoms.

My biggest fear is getting out-climbing out.

I work up my confidence to do this even though it has been some time that I do okay with it.

Those nightmare symptoms lurk in the back of my mind and it's hard to get past them.

I guess it just takes time to gain confidence?

I got myself laughing today thinking all I need is an eject button.

I am thankful that I can take baths-I know it's not something to be taken for granted and I do feel for those of you who are struggling with this.

lieze

It's the little things we must cling to. Happy that you can now do this.

So one of my main symptoms is that I have a hot forehead all the time. I don't have a temperature because I check it and it's always normal. The best way I can describe it is that it feels like my brain is on fire and therefore the heat is seeping onto my forehead. Sometimes it feels this way with my eyes too, like my eye sockets are burning. Does anyone else have this and if so, what do I do? None of the doctors I have been to have been able to help me with this. Please help!

I have recently moved to Dunlap, IL - a little town outside of Peoria, IL and was just wondering if there is anyone on here who is in the same area. It's always nice to have a face to face conversation with someone who understands what I am going through. Thanks.

I was told by my doctor 12-15mg a day but I know you can't ever have too much so don't worry about over salting. I salt everything. Put salt in my water, all drinks, food, etc. You can even take salt tablets but they made me sick.

I just put a tablespoon in my coffee and it was pretty good, actually. We will see if it gives me energy but at this point I am willing to try anything. Plus I like herbal meds a lot better! Thanks for posting!

Thanks, everyone for your input. I will def. try some of the suggestions. I appreciate the help!

So is the Butcher's Broom not working for you anymore? Are you still taking it?

I am with everyone else and would suggest e-books. You can download them and make the font as big or small as you want. I go throught phases where I can't read either. I usually can read a few pages or chapters and then I am done. Certain fonts also make it worse so you may want to see if you can change fonts. They also have page magnifiers you can buy at Barnes & Noble to make the font bigger and give you a light while you do it. I usually can read while sitting up in bed propped on pillows. Just do what you can and don't worry about what you can't. I understand how you feel though. I am an avid reader and wouldn't know how to cope without my books. Best of luck to you.

Kari,

My son has this symptom also. His ped from Hopkins has recently started him on the MCAD (Mast cell activation regimen) regimen.

Julie

Thanks, Julie. Do you know what the treatment is for it? Did they put him on meds or give him any non-med regiments to try? I am apparently going to need to get tested for this but it sounds exactly like what I suffer. Thanks for all your help.

WOW! He really has tried everything. I was going to suggest Reglan but since that didn't work for him, I am of no help. I am so sorry he is going through this. My gastro told me that not drinking anything 30 minutes before or after meals will help with nausea and it did seem to help me a little, although it is very hard to get used to. Maybe that will help. Good luck. I really hope you find something.

I'm not sure if anyone else suffers this but right now my forehead is on fire. It is very hot to the touch but when I take my temperature, it's fine. The best way I know to describe it is it feels like my brain and my eye sockets are on fire. I don't have a headache but my forehead is hot, hot, hot. I have put cold washclothes, ice packs, etc on and it does no good. I don't know what's going on inside my head to make this happen but I know I am sick of it. Does anyone else have this problem and if so, what can we do about it? Are there exercises we can do or medicine that will help? Please help. I feel like my brain is going to overheat!

I know we aren't supposed to take hot showers or baths so I take warm showers. If I take hot showers, I get dizzy, lightheaded, etc etc. My excerise scientist told me on days that I don't feel like exercising to take a warm bath to get the blood flowing. I don't know if that is what you were looking for or not but I would suggest warm temperatures. I take a little bit of a warmer bath just because I know the water will get cooler as time goes by. Hope this helps.

I have the same problem but I have too much adrenaline in my body so I just assume that is why I still get some of the symptoms while I am sitting or standing. I can no longer watch close sports programs or scary intense movies, tv shows, etc. You just have to limit what you do and figure out what prompts your symptoms and stay away from those! Good luck.

If you can stand it (no pun intended), then I suggest YOGA. It doesn't get your heart rate up that high and it really helps. Otherwise, I use a stationary bike. I can run for about 5 minutes right now but hope to increase it. I know your heart rate will increase so I use a heart rate monitor just to see how high it gets. Obviously, 220 is too high. I try to keep it around 160.

I agree with Jenna. Go see the ENT first and if they can't see anything, more than likely they will refer you to a neuro. However, you could get lucky and they could see something and that solve your problems. I hoping for this solution. You are in my thoughts. Good luck and hang in there.

Do you have to have that doctor's approval in order to go to a POTS specialist? If not, just go to a doctor who specializes in POTS or go to a cardiologist. So sorry you are having frustration. I completely understand. I had 3 years of this! Good luck, hun.

WOW! Great information. This is why I live this forum because I learn more him than anywhere else... including my doctor! Thanks for posting!

Thanks, everyone. I talked with one of my doctors today and she was very helpful and said she knows what she needs to write down and is going to help me everyway she possibly can. So, I am not completely hopeless but I am pretty sure it won't turn out well. Here's still keeping fingers crossed though.

I had my bed elevated for a few months and it didn't help at all, if anything I think it made it worse. We took it down and I went back to how I was before. I don't think it helps a lot of people but for those that do, they swear by it. Hope it helps you. Good luck!

After months and months, I am about to hear the decision regarding my long-term disability. My claim came back from medical review and they are sending my doctors a medical certification letter... I hope this is good news. I contacted my doctors to let them know the letter is coming and so I am hoping all goes well. Short-term disability was denied by the same company so I am not too hopeful. Here's hoping. Fingers are crossed!

Another Kari (although not my real spelling)- I'm 36 and if I got a tattoo my Mom and Dad would cry!

I hope I live to be old and tats are not cute on little old ladies!

You have to have the personality to carry them off...I don't.

I do have an Eeyore jibbit on my crocs though...I kind of think of him as my shoe tat!

Perhaps that is the difference - I do not think I will live to be old! Nor do I want to. We shall see how Mickey looks around 50 though!

I got a tattoo about 20 years ago of a dolphin jumping through a sickle moon with a couple of stars around it. It's small, and on my inner left ankle. That way, I can hide it if need be. About 6 years ago, when I found out I was allergic to my eye makeup, I had eyeliner tattooed on. It's very nice to go out and at least have some kind of 'make-up' on my face, because unless it's a special event, I don't wear any. TIP: Don't put your tattoo on any hard, bony area if you can avoid it. Youch.

Cheers,

Jana

HA HA Jana! Mine is also hidden on my lower left stomach. Although, I do have the itch for another one. Like the idea of waiting to see about the logo contest though! That is a thought!