Chiari Malformation Community
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Avatar universal

anyone experiencing entire-body hot flushing?

One of my symptoms is a hot flushing feeling in my entire body like burning up from inside. I cannot seem to identify any triggers. Has anyone experienced this or any suggestions as to what it is?
26 Responses
620923 tn?1452915648

  Hi....do u know if u have a syrinx? Many with a syrinx have more temp issues like this, but those with Chiari may experience it as well.....

Our brain stem is compressed and it is the control center for everything including how our body recognizes and feels heat and cold.....

Avatar universal
My husband has been complaining of "feeling hot from head to toe" a lot recenlty.  He has a syrinx - like selma mentioned - from his T2 to his T10.
I had a syrinx but it diminished.   I still feel this sometimes but no syrinx anymore.   The flush I feel now is more intense than what I had felt back when I had syrinx in neck.  
@Integer- Are you sure the syrinx hasn't reformed?
Avatar universal
The brain and cervical MRI showed no syrinx. I had the thoracic and lumbar MRI's this am & should be able to get report in couple of days.I did take a sedative for this am since it was back to back MRI's all the way in tube - I would recommend that :-)  also prayed while in their for someone going thru worse issues than me! Selma I liked your suggestion about pretending to be listening to road work that  made me smile inside the tube.
620923 tn?1452915648

Glad that worked for u : )

We have to invision things that r not scary so we can remain relaxed.....I got so many MRI's I could fall asleep inside...with out being sedated....lol....
1755089 tn?1376053555
For me it feel like I am on fire or high fever sometime and other time like if I was sitting in an bahtub filled with ice.
Avatar universal
:-)  I guess I don't have the ice sensations since I live in Atlanta where it already seemed hot to me even before these symptoms started... do you have a syrinx? I seem to have heard a few times that the syrinx contributes to this?
1755089 tn?1376053555
I in fact have 1 large in the neck and 2 more.
Avatar universal
My son has chiari, but we are in all the learning stages right now of all this.  I am learning that of all the symptoms he has are all I am reading that are with chiari, just never put it all together until now.  My son gets very hot and wakes up through the night soak and wet with sweat. He is always burning up.  He has an appointment in the next week with his neurosurgeon.  But I am reading about a syrinx, we have never been explained any of this.  Wondering if you could explain a syrinx?
620923 tn?1452915648

  Hi a syrinx also know as syringomyelia is a cyst like cavity that fills with CSF  when there is an obstruction to flow or injury to the area....
The cavity can continue to fill with the fluid and expand cutting off flow and compressing nerves...if left go for too long this can cause perm nerve damage....and is one of the reasons the chiari PFD surgery is done, to prevent a syrinx from forming or to allow the syrinx to shrink if one is already formed.
A syrinx is commonly found in the cervical spine as it is the weakest and most likely place for an injury type syrinx to occur that this is often the only place many Drs look to rule them out,HOWEVER those with Chiari can also have a syrinx form in the thoracic and lumbar spines too, so get them all checked.

Hope this helps.
Avatar universal
I received results of thoracic and lumbar MRI's  they show NO syrinx an I am happy about that. Now I am on antibiotics for 2weeks and one week later a CT scan of sinuses to determine if there is a blockage and if there is then the ENT will do a "balloon" procedure to open it up. Are you familiar with this?  Tax so much
620923 tn?1452915648

  Hi....the balloon procedure is done with arteries and heart surgery, so  it is a common practice to unblock areas....I have not heard it done for the sinus area, but I do not see y it would ne be effective.

Good news no syrinx  : )
1306714 tn?1327257080
I had this issue also with hot sweats after my surgeries.  I am 49 and I actually ended up going to my PCP to have them test my hormones level to see if it was time for all this life changing stuff which all my test came back good.  If this is how it feels going through your change I'm sure not looking forward to it.  I don't have this issue now, so hope you will also see an improvement.  
Happy to hear you don't have a syrinx.  Good news.  
Linda :)
@Selma. Your so awesome and so inspiring.  Not  to have no sedation during an MRI.  NO WAY.....They told me I had to be sedated my last MRI flow study due to the amount of time I had to spend in the tube. I automatically ask for a mask which helps me a lot also.    Good idea about the construction work.  Lot of building being built. LOL....
620923 tn?1452915648

  Really? they told u , u had to have sedation, it was never offered to me, and I was in close to 3 hrs the one time....ugh....

I just close my eyes and think of construction workers...lol...the dang thing sounds like a jack hammer...so y not? : P

I also had no idea a mask was available...hummmm
1827123 tn?1383865276
I fell asleep in my MRI also...not sedated. I had on some headphones with music playing, but could still hear the banging. I think I just had just been so sick that my body needed the stillness and I was out. They keep waking me up tell me to stay awake because I moved more asleep.
As for the heat/temp thing. I do get the fever feeling when HA are bad. Yesterday was a rough day, actually took my temp being sure I must be coming down with a fever. It was normal. I have been experiencing strange heat feelings on my skin. Feels the same as when a small child urinates on your leg, that hot intense fluid feeling....not sure what is causing it, but has been happening on my face, neck, arms, and thighs. Twice now I have actually touched my legs to make sure it isnt me peeing myself!!!  LOL! Whew, thank God that that isnt the cause!!!
1306714 tn?1327257080
Yes Selma if you ask when going into an Mri for a mask they give you one.  At least here in our MI hospital they do and I'm so thankful for that.  Here I had to have 2 days of test because they wouldn't allow me to me in there for 3 hours.  Different places, different ways.  Seems to me the protocol would be the same for everyone.  If anyone goes into get MRI ask for mask.  Just interested to see if all hospitals do this.  I wouldn't of know if a friend of mine who worked at hospital wouldn't of told me.  It helps.
Have a blessed day.
Linda :)
Avatar universal
I think I had a mask - does it look like what a catcher on a baseball team wears?
1996562 tn?1330337839
Just wanted to say that I have had all sorts of problems like this.
For me it seems that the trigger is mostly environment related. For example, I'm having a hell of a time with the current heat and humidity so I'm going to relocate to the basement for the day, yayyy :) It sounds weird but it feels like my blood is too hot (not what's happening but that's what it feels like).  

On the other end of the spectrum, If I'm in a place that's too cold, my body has serious trouble compensating and I get sick, and get hot patches all over, then it just feels like I have the flu. So Ideally I need perfect weather or a conditioned room , or I'll be completely uncomfortable and freaking out. I think somewhere in the high 70's is "the good temperature" for a room and of course the usual ideal humidity (i don't know, maybe 50%) and an air purifier can't hurt if dust or allergies are an issue.

Too much activity seems to also trigger some issues like this. If you'd like me to elaborate on that, let me know.
2078936 tn?1341947374
i get this and have been told for years its my hormones i was even put on HRT even though i'm only 29!! i constantly have the fan on in my house and just drink plenty not much else you can do really i don't think. p.s if there is anything i'd appreciate some advice myself :)
1996562 tn?1330337839
Well it's just like any other symptoms... your doctor can blame it on any one of you body's systems, but they can't tell you why it's happening. I'm 30 myself, and I've had a lot of that... I walk out of the dr's office thinking, "I'm far too young for this. There's gotta be something really wrong here." (especially when I got the shingles haha)

Basically, if you have a bad case of CM, you are always going to be on a fine line of health... So what you can do is eat healthy, minimal exercise (by this I personally just do my normal chores in small increments which usually involves stairs **i've read that people with tethered cord may have trouble with stairs- pain and what not). And you need to sleep regularly and comfortably as possible. And also, during the day you need to relax a lot. Most people will find a reclining chair to be comfortable (i'm guessing because I don't have one, but I put my feet up and recline my office-like chair) and you may need to fiddle around with different pillows in different places while you relax until you get it right.

If you're super lazy when it comes to diet, like i am, I would recommend those healthy juices at the grocery store. Especially those ugly green ones :) and right now I'm enjoying the blueberry/berry mixed juices. They are expensive but worth it unless you want to make your own. I also eat a lot of those healthy bars, and wheat-thins seem to be a staple :)

I hate to suggest something a little over $100 but I personally find the tempur-pedic cloud pillow to be the only pillow i need under my head at night and I sleep on my back now. I tried one out at a  local bedding store before I bought it.  http://www.tempurpedic.com/Filled-Pillows/Tempur-Pedic-TEMPUR-Cloud-Pillow.asp
Avatar universal
I was told the heat sensation was due to menopause.  I thought, WTH, this is the real curse!  It was the first symptom I lost post op.  we are having a crazy hot heat wave too (>100 degrees) & I seem better able to tolerate just a few min of it.
Avatar universal
For 4 or 5 years I have been experiencing strange symptoms that the doctors cannot answer. Without warning I will develop a strange flushing sensation in my body. (No, this is not 'hot flashes' of the face and neck). It feels like a powerful tide is surging from my crotch to my throat or the other direction, then in a 'blooming' feeling. Sometimes icy cold then very hot. It literally feels like an ocean wave. It may continue for a few minutes or even longer and the intensity varies too. At the same time I feel 'spacy' or have sensation of unreality. I thought it was connected to anxiety and panic, but doctors have dismissed that. I have had three 'heart episodes' in which this flushing was present. I have also experienced it without accompanying heart issues. I have come to feel that it may be hormonal (but not female hormones), however the doctors I've see, again, dismiss that idea. I'm at my wit's  end; it is scary, and disturbing. On the web I can find no information about other's experiences of this kind of flushing. Do anyone out there have this kind of episode and what if anything have you discovered about it.?
I am a 60yr.old female with panic and anxiety issues and PTSD
620923 tn?1452915648

  Hi and welcome to the Chiari forum.

There are so many neuro issues that can cause anxiety, panic issues...not to mention the odd flushing sensation u described,,....

May I ask are these ur only symptoms or are these ur main issues?

I also want to add with neuro issues like Chiari many of us have also had heart palps..and required an echo to make sure it was not a true heart episode....

If u do not mind expanding on other symptoms u may have.
4487186 tn?1362144662
i kinda get that but its more of a hot flash like, the feeling when you have a high fever. but it only comes when i have my period. my symptoms all seem to flare pretty high when i get my period
Avatar universal
Hi Selma,
I wish I had come back to this site sooner to see your reply. The panic/anxiety got very bad for a few years and at the time, I also had high blood pressure that went for several years undiagnosed. (No health ins.) Once my blood pressure was well regulated, it seemed to slow the weird flushing. I have now (in the last few years) been to see a truck load of doctors: kidney specialist -thought I might have a tumor on kidneys- everything came back fine. Endrocrinologist - everything apparently fine. Although I never felt like she was all that concerned about me or what I was dealing with. Rhumatologist - thought I might have autoimmune disorders, ie RA, Lupus, etc.
The thing that bothers me is that they can't seem to figure out WHAT the problem is, why the flushing all over my body. I still have anxiety/panic and when I feel it coming on I can take a Xanax which (at least to this point) can interrupt the cycle and calm me down. Boy, what I wouldn't give to be able to live without pills. BP pills, anxiety/panic pills, depression pills. Ugh.
I had heart palpitations a lot in my adult years. 6 months or so ago, I began using Magnesium Oil (topically) and the palps have really slowed down.
Interesting stuff...
Thanks in advance for any advice or thoughts you have.
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620923 tn?1452915648
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