Jump to content

I Really Need Some Help !!!


suziebear

Recommended Posts

Hi,

I am sorry for asking another really stupid question. I have read the info on the dinet website and everywhere else I can find in relation to symptoms, but I am still confused with mine.

I get a strange lightheaded dizziness that I struggle to describe, problem is I get it without the tachycardia. I can be sitting perfectly still relaxing, or at the computer working or just driving along and out of no where I have these strange very intense sudden lightheaded dizzy feeling. I take my pulse when it happens it is normal, not racing, or elevated sitting around the 85 to 90 which is normal for me sitting down or relaxing.

I also at other times get these funny flushes where my chest (what seems like on the inside) first gets hot then the rest of me.

I was diagnosed with POTS following a tilt table test. I get other symptoms at time, gastrointestinal, headaches, glary or blurred vision, pins and needles in my feet or left leg in particular, chest pain and shortness of breath. I also get a different dizziness where all day I am slightly lightheaded and off balance. This sounds so strange but it feels like I am walking but there is a heap of pressure pushing my body to the side. I mentioned that one to a doctor to be told that it was ridiculous and I was making it up.

Just wondering if this fits in with anything else that anyone else is feeling?

Or if at all possible if some of you could try and describe your symptoms to me? How they make you feel physically and emotionally?

I am really struggling with the physical symptoms of this and well honestly, really quite scared.

Thanks for you help and support

Suzie.

Link to comment
Share on other sites

Suzie,

Don't let anyone tell you those symptoms are ridiculous. I feel strange sensations all day long that I can barely describe. Many relate to "dizziness" or lightheadedness, but not in the tradition sense. I feeling like I am suddenly falling, sliding, my head is "floating", tilting, etc. My HR and BP are pretty constant through these symptoms, sometimes I go into a cold sweat or my hands get clammy. I also get both cold sensations and warm sensations that often start in my chest. Sometimes I get visibly flushed, sometimes I don't. For years I was afraid to describe my symptoms because they sounded so crazy, but they are all dysautonomia. Hang in there - you are not alone!

~ Broken_Shell

Link to comment
Share on other sites

Our bodies all do wierd things all the time that we often have no explaination for. I know you said you take your pulse to see if your tachy during the dizzy episodes, but have you even taken your blood pressure when this is happening?? If you dont have a BP machine at home, I would suggest you get one. You can get fairly inexpensive ones right from your local pharmacy. It has been a godsend having one. I think almost all of us here have them. I can tell you that I have something similar happen to me. It tends to happen more often when I am sitting on my couch reading or watching tv. All of a sudden I feel like Im really warm and like a dizzy flush will come over me. I know it sounds almost like Im describing a "hot flash" but Im 28, so I dont think thats what it is. But thats the best way to describe it. I feel like I cant breathe as well either. Like I cant take a deep breathe if I wanted to. Its not anxiety, becasue Im perfectly calm when its happening. My hubby and I think it might have something to do with the way my body is positioned when Im sitting. Not slumped over or anything, but not ramrod perfect posture either. Just relaxed. He said maybe something to do with interrupting blood flow and pressure on my heart. I know that my tachy isnt necessarily worse then it normally is (I have innapropriate sinus tach so my resting HR is always over 100). So no clue why that happens. Doc isnt sure either. He just told me to change positions.

Anyways........sorry for the novel there. Just know that you are sooooooooo not alone with all the confusing symptoms. POTS affects all of us in very many different ways. ((((((HUGS))))))) At least you have a DX and thats a start to helping you feel better. If your not comfortable with what your dr is telling you, get a new one. Unfortunatly, with POTS, we have to doctor shop to find someone who is knowledgeable about dysautonomia and willing to listen.

~Kelli

Link to comment
Share on other sites

This is a brochure from DYNA, but look at page 5.... it lists a lot of symptoms that many of us here ask ourselves "is it POTS/dysautonomia"?

http://www.dynakids.org/Documents/You_Have...a_Condition.pdf

Link to comment
Share on other sites

Yes, I get dizzy spells like that mostly when I've been upright for too long but they can persist even when lying down. And they are usually accompanied by chest pressure/tightness/burning that can transition to chest pain if I've been up too long or talking too much. When this happens, I get burning flushing from my chest up and I feel SO fatigued for hours after and just kind of ache everywhere. My pulse might be normal at these times, but my BP is often high.

I've gotten some relief from these spells by taking carvedilol, which is an alpha/beta blocker. I had standing/supine norepinephrine levels and my cardiologist really wanted to address my elevated standing norepi levels, feeling that they were responsible for the chest pressure/pain and flushing.

Also, I've found that benadryl helps with the burning feeling (but it will make me very sleepy). Otherwise, lying down in a quiet place for awhile is the best treatment for me.

Link to comment
Share on other sites

I agree that you should check your blood pressure in addition to your heart rate. Also check your respiratory rate and see if breathing into your hands helps slow your rr. It was a good idea that somebody mentioned, to see if your blood is pooling because you're sitting up...but I do think your HR would react to that. If it's related to the computer, you may be overstimulating with the lights from the screen. But a lot of what you mentioned is breathing, chest, and light headed type dizziness that can mean your repiratory rate is too high.

Wierd symptoms are like so POTS. I used to get the oddest symptoms, I was afraid to tell people because I thought they would put me in a psyc ward. But I used to see things, hear wierd sounds, and if I closed one eye, I saw in red. If I closed the other eye, I saw in green. It was all from the POTS. "seeing things"=visual disturbances due to blood flow issues to the eyes and head in general. "hearing things"=turned out to be my blood in my ears. red-green vision=happens during extreme hypotension. But yeah, doctors looked at me like I was totally nuts for a long time.

You said you feel pushed to the side? Did I understand that right? Did you check out your vestibular senses?

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...