January 11, 2015 at 7:28 pm #772
Hello, I have been diagnosed with POTS and while I would tremble when having a flare…I now tremble all the time! Also, I have the flu this week and the trembling is much worse…weakness I suppose? When I take the Z/Z combo; I don’t shake as much but if I forget…look out. I can also feel the trembling in my legs as I sit down too? My head doesn’t shake..just my legs and arms and hands. Just wondering if anyone else has gone through this?
Thank you so much for your time 🙂January 14, 2015 at 3:04 pm #5215
Marsha! That was one of my first symptoms. My shaking was worse on my right side, and I remember asking the neurologist if it appeared “neurological” or due to a flood of adrenaline. Antihistamines AND Diamox was necessary for me to reverse my tremor. I saw some videos on YouTube of others with DRAMATIC tremors and shaking of the entire body (something I also experienced). 🙁January 14, 2015 at 9:04 pm #5223BarbaraParticipant
My hands can tremble when resting but that seems to come and go, it’s definitely improved since I’ve been on the growth hormone.
A new symptom I’m getting recently is buzzing, it’s almost like electrical buzzing. I have heard others describing this in the past but until recently I didn’t know what it was like, it’s definitely weird. Does anyone know what could be causing this ? Does it sound like some mineral imbalance or something, anybody else had it ? (or cured it)
(UK)January 15, 2015 at 10:48 am #5225
Barbara, I had “buzzing”, but I *thought* Diamox is what got rid of it… Hmm, You are already on Diamox, though. Many of us describe this, so I’ll be interested in hearing how others have dealt with it!January 15, 2015 at 2:48 pm #5226
Thank you so much for replying Dr. Diana and to the others too 🙂 I would like to thank you Dr. Diana for this website and her work as I was on my hands and knees ill and no one could figure out what was wrong with me. I also have fibromyalgia and Meniere’s Disease along with asthma and severe gerd. All these issues along the years and then non-hyper POTS…24 hr urine ruled that out…? I know for sure it is a mast cell issue as my symptoms abate quite a bit when I take the Z/Z combo.
It is so wonderful to not feel alone…to have a community to come to and access to research and suggestions that work!
As they don’t check for histamine in urine here in Ontario, Canada; does anyone know of how to have this test done?
Thank you all again…January 15, 2015 at 3:41 pm #5227
You are so welcome, Marsha! And a huge thanks to all of the patients here who are contributing their knowledge and experience, also. Although I hate to keep mentioning the book, I have a feeling it may help you a lot, Marsha. In it, I summarize the tests for histamine and discuss fairly extensively why many of us think we have mast cell activation, but all we really know with certainty is that we have a histamine problem. That distinction is crucial for proper treatment. Also, many of us with high intracranial pressure are misdiagnosed with Miniere’s disease, so I can’t help but wonder about your case… 😉January 15, 2015 at 8:29 pm #5232
Hello again and thank you for your reply.
This POTS illness is like a puzzle isn’t it? I have been through this with Meniere’s…so the balance test says there is damage done by ? (? they conclude is inflammation due to too much fluid) but then what is causing the build up of fluid off and on?
At least it hasn’t taken me 3 yrs (which is nothing compared to some people) to find something to help with the POTS!
I have purchased your book but just wasn’t far enough into it 🙂 I understand what you are explaining and saying….I just don’t know how to approach my internist… I too am on disability and used to be in the medical field…so have a fair amount of knowledge…and would like to get down to the primary issue.
May I ask you Dr. Diana…are there blood tests for “other” blood cells to determine if they are misbehaving so to speak?… I really don’t want her to say “well, it’s probably just a histamine/mast problem so take your antihistamines and off you go.” I do feel much better with the antihistamines and am worried that she will see that as a cure!
Your book is a wealth of information…so precise and well put together!
Thank you 🙂January 16, 2015 at 11:11 am #5235
I wish we had effective blood tests for this. Creativity is in order. 😉 I’m so glad you are making it through the book. Big hug…January 16, 2015 at 12:04 pm #5237BarbaraParticipant
One cause for the build up of pressure/fluid, which also could involve/trigger inflammation, is if you are hypermobile, or have suffered a whiplash type ligament injury, especially if you have differing underlying anatomy – i.e. low lying cerebellar tonsils (or a Chiari malformation), or a short clivus, or a retroflexed odontoid. I invite you to read the following post, for more info on this:-
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