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Hi. New and have a question.
Posted: 29 September 2011 05:27 PM   [ Ignore ]  
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Hi. I’m a mother of 4. 3 of my children have Classic Type EDS as does my husband and his mother. So far it hasn’t skipped a generation in this family. I am so happy to find this site! My youngest daughter, 14yrs., has had a lot of stomach aches growing up and at 6 went through a stomach biopsy. First they thought Celiac Disease and then not. She still suffers from stomach aches , although not every day. She complains a lot that her food runs right through her.  She is getting a lot of viruses with a sore throat lately and is now complaining of a “lump” in her throat. She’s been to the doctor twice for strep tests and all come back negative both the rapid and the cultured. The last visit the doctor recommended Zyrtec, which actually did seem to help a little for about a week or two. Imagine my intrique when I read about and listened to Dr. Diana’s videos telling us to try Zyrtec and Zantac! I’m just wondering if anyone else has had this lump in the throat feeling? She has also complained of feeling like she can’t breathe and her heart beating very fast and skipping as well as headaches stemming from her neck. She’s seen both a Cardiologist and an Allergist. Everything is normal. After coming to the site I am now wondering if she has POTS or Mastocytosis or both. I’m already going to the store later to get more Zyrtec and also Zantac.
My husband works nights, which probably doesn’t help, but on his days off, and every other week that’s 3 or 4 days in a row, he sleeps almost the entire day. I want him to the combo too. I can’t wait to see their doctors . I have already downloaded The Driscoll Theory and I want to have my 14 year old tested for POTS.
Thank you Dr. Diana for your research and this site. You are sure to help so many. Now if we could just get this heard nationwide and on every doctors desk!

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Posted: 01 October 2011 08:18 PM   [ Ignore ]   [ # 1 ]  
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HI,
I too have the lump in my throat sensation off and on at times…. It can be different things.  I know when mine first manifested several years ago it was due to dyspepsia because of all my sluggish digestive issues due to POTS.  You can also have the sensation (I call it Globus) due to anxiety or cricopharyngeus spasms.  I know if Im watching a TV show that is making me almost cry I will feel that lump in the throat.  I also have allergies so it could be a mast cell trigger response.. who knows.  IM learning all that.  If it continues to persist I would have an ENT to look at it.  Otherwise it could just be related to the digestion issues.  I take Domperidone for my sluggish digestion problems it helps with motility.  I too am excited about Dr. Diana’s research.  GREAT stuff!!  It could change all our lives!! TRacey

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Tracey Richardson
Lexington, KY
EDS3, POTS, Dysautonomia, Reynaud’s, and maybe other things as I learn smile.

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Posted: 24 October 2011 02:51 PM   [ Ignore ]   [ # 2 ]  
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givnmegryhr - 29 September 2011 05:27 PM

Hi. I’m a mother of 4. 3 of my children have Classic Type EDS as does my husband and his mother. So far it hasn’t skipped a generation in this family. I am so happy to find this site! My youngest daughter, 14yrs., has had a lot of stomach aches growing up and at 6 went through a stomach biopsy. First they thought Celiac Disease and then not. She still suffers from stomach aches , although not every day. She complains a lot that her food runs right through her.  She is getting a lot of viruses with a sore throat lately and is now complaining of a “lump” in her throat. She’s been to the doctor twice for strep tests and all come back negative both the rapid and the cultured. The last visit the doctor recommended Zyrtec, which actually did seem to help a little for about a week or two. Imagine my intrique when I read about and listened to Dr. Diana’s videos telling us to try Zyrtec and Zantac! I’m just wondering if anyone else has had this lump in the throat feeling? She has also complained of feeling like she can’t breathe and her heart beating very fast and skipping as well as headaches stemming from her neck. She’s seen both a Cardiologist and an Allergist. Everything is normal. After coming to the site I am now wondering if she has POTS or Mastocytosis or both. I’m already going to the store later to get more Zyrtec and also Zantac.
My husband works nights, which probably doesn’t help, but on his days off, and every other week that’s 3 or 4 days in a row, he sleeps almost the entire day. I want him to the combo too. I can’t wait to see their doctors . I have already downloaded The Driscoll Theory and I want to have my 14 year old tested for POTS.
Thank you Dr. Diana for your research and this site. You are sure to help so many. Now if we could just get this heard nationwide and on every doctors desk!

Hi Sweetie, When I read your first line, I thought for a second that you had 4.3 kids! LOLThis is tough to tell over the internet! I’ll throw out some possibilities, though, how’s that? Lump in her throat: Did you rule out inflamed tonsils and inflamed uvula? Assuming that’s not the issue, some people get a “glob” of mucous in their throat from… you guessed it ... mast cells! It can cause chronic throat clearing—that sounds so weird, but my son developed it! I just have to hack now and then…  OK,  the breathing, fast heart beat headaches/neckaches—that sounds like POTS to me! Can you watch the video on POTS and dysautonomia I have? It will give you some ideas. Then, YES, I would certainly check with your doctor about mast cell therapy (zyrtec, zantac double dose is a good start) and a mast cell stabilizer, and avoiding histamine foods, beverages. If you suspect POTS, this treatment will help because we are fighting the vasodilation that makes it worse. If headaches/neckaches are an issue, I’d recommend trying a soft cervical collar at night time while you beg your doctor for a day or two trial of Diamox (if there are no contraindications). In that short period of time, it will be OBVIOUS if he is responding, and we can talk long term management. (Some day we’ll be able to “fix” this—Part 2 coming soon! But the technique is not perfected yet, so we need to wait. It will all make sense, then, though!). Gentle hug to you and your 4.3 kids. hee-hee. smile Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 24 October 2011 02:53 PM   [ Ignore ]   [ # 3 ]  
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tracey - 01 October 2011 08:18 PM

HI,
I too have the lump in my throat sensation off and on at times…. It can be different things.  I know when mine first manifested several years ago it was due to dyspepsia because of all my sluggish digestive issues due to POTS.  You can also have the sensation (I call it Globus) due to anxiety or cricopharyngeus spasms.  I know if Im watching a TV show that is making me almost cry I will feel that lump in the throat.  I also have allergies so it could be a mast cell trigger response.. who knows.  IM learning all that.  If it continues to persist I would have an ENT to look at it.  Otherwise it could just be related to the digestion issues.  I take Domperidone for my sluggish digestion problems it helps with motility.  I too am excited about Dr. Diana’s research.  GREAT stuff!!  It could change all our lives!! TRacey

Great thoughts and ideas, Tracey! And thank you for all of your support and encouragement. It means so much… Big hug, Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 24 October 2011 03:40 PM   [ Ignore ]   [ # 4 ]  
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Update on the throat sensation… So I went to the ENT 2 weeks ago…he actually ran a fiber optic scope down my nose and looked at my vocal cords… Ive been having trouble with my voice.  (Im a consultant who teaches - use my voice alot)  He said my muscles around my vocal cords were aggravated, he called it Muscle TEnsion Dysphonia.  He said it causes a sensation in the throat as if something is there… I have allergies and possibly mast cell issues one top of that.  Plus I think there could be a relationship to EDS and the tissue around the throat area….. Then add some anxiety to boot sometimes… then globus kicks in so sometimes we dont know what it is exactly..we just have to treat the symptoms the best we can…... Im actually having to go to speech therapy to retrain my muscles around my vocal cords to stop squeezing in.  ENT told me to STOP clearing my throat if possible and always try to have a lozenge or candy at times to keep my throat wet.  Sugar makes things thick in there too :(.  Good Luck!

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Tracey Richardson
Lexington, KY
EDS3, POTS, Dysautonomia, Reynaud’s, and maybe other things as I learn smile.

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Posted: 14 November 2011 08:04 PM   [ Ignore ]   [ # 5 ]  
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tracey - 24 October 2011 03:40 PM

Update on the throat sensation… So I went to the ENT 2 weeks ago…he actually ran a fiber optic scope down my nose and looked at my vocal cords… Ive been having trouble with my voice.  (Im a consultant who teaches - use my voice alot)  He said my muscles around my vocal cords were aggravated, he called it Muscle TEnsion Dysphonia.  He said it causes a sensation in the throat as if something is there… I have allergies and possibly mast cell issues one top of that.  Plus I think there could be a relationship to EDS and the tissue around the throat area….. Then add some anxiety to boot sometimes… then globus kicks in so sometimes we dont know what it is exactly..we just have to treat the symptoms the best we can…... Im actually having to go to speech therapy to retrain my muscles around my vocal cords to stop squeezing in.  ENT told me to STOP clearing my throat if possible and always try to have a lozenge or candy at times to keep my throat wet.  Sugar makes things thick in there too :(.  Good Luck!

Please let us know how that’s going, Tracy! So many of us deal with voice changes (including me). My ENT said I had a thickening of my vocal cords with tiny vessels running down each one. All I could think of was “Male Puberty”! Agh! My son has constant throat clearing which we think is mast cells. That’s a very common symptom. Hang in, Sweetie, smile Diana

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Posted: 22 April 2012 10:19 PM   [ Ignore ]   [ # 6 ]  
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Hi . Sorry I didn’t respond back . So much going on around here. My EDS daughter,16yrs, had to have surgery on her wrist due to a distal ulnar radial dislocation. Only took 3 months and 4 doctors to finally do something. Can you imagine? The poor kid . One doc wouldn’t even give her pain meds even though she was passing out and vomiting from the pain! I fired her butt!
Anyway on to the previous post. Thank you by the way for your responses. This is my almost 15 year old with the sore throat and headaches. She has been taking the zantac and zyrtec and it doesn’t seem to be helping. I didn’t get the other med. The doctor thought allergies and then acid reflux. I am taking her to an ear nose and throat doc, but I also wonder if she has Celiac disease. When she was 6 they did a stomach biopsy that they said was positive . Then they did the blood test which came back negative. Backwards I know, but they decided she didn’t have it because her stomach didn’t show signs. I forget what they called the thingys that they look for changes in. Presently she isn’t complaining about her stomach although I know there are so many symptoms to Celiac. I will bring up POTS but will a ear, nose and throat doc be the one to see for that? Or should I take her to a gastroenterologist or an internist. Who would be able to find out which she has or if she has all of them? After the fiascos with my daughter’s wrist I am losing faith in doctors. I don’t understand why there aren’t more doctors who understand EDS or heck, even know what it is! Can you believe a physical therapist asked me to spell it and didn’t know what it is? I told him right out I couldn’t believe a PT at a bone and joint institute didn’t know what EDS is. Now you see why my screen name is givnmegryhr! Sorry this is so long but I’m always going to doctors. Last month EDS son , 13 had surgery for exotropia. Just one thing after another. I know you all understand. Sorry for the rambling. Just point to what doc to see please for my daughter with the throat and headache issues. Thanks in advance. Everyone take care. And always thank you Dr.Diana for your hard work!

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Posted: 23 April 2012 06:45 PM   [ Ignore ]   [ # 7 ]  
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givnmegryhr - 22 April 2012 10:19 PM

This is my almost 15 year old with the sore throat and headaches. She has been taking the zantac and zyrtec and it doesn’t seem to be helping. I didn’t get the other med. The doctor thought allergies and then acid reflux. I am taking her to an ear nose and throat doc, but I also wonder if she has Celiac disease. When she was 6 they did a stomach biopsy that they said was positive . Then they did the blood test which came back negative. Or should I take her to a gastroenterologist or an internist.  I don’t understand why there aren’t more doctors who understand EDS or heck, even know what it is! Can you believe a physical therapist asked me to spell it and didn’t know what it is?  Thanks in advance. Everyone take care. And always thank you Dr.Diana for your hard work!

Hello, OK, doctors! My primary checked me for celiac, or you can go to a GI doc. Honestly, though, almost ALL of us consider this diagnosis, but we don’t have Celiac. We all seem to have horrid reflux, too. Did you see my lecture (videos) at ISNVD? I think all of these symptoms are from compression of our vagus nerve, and I’m working on that AS WE SPEAK! More coming soon! smile Diana (oh, my PT said he “didn’t believe” in EDS. HA!)

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