babettess Posted May 27, 2009 Report Share Posted May 27, 2009 Dear Friends,Thank you so much for this forum where I can come and ask the questions that no one else will understand. I so appreciate all the replies and the kind words. I know when I'm baffled I can come here and the participants will know almost as much or possibly more than most doctors. Well I've been to multiple doctors over the course of the last year for multiple reasons. One reason being these weird spells. None of them seem to know why I have these spells where I feel like I'm being choked and can't breathe. They also don't seem too concerned about this although it is the symptom I would most like to get rid of right now. This comes on suddenly and I haven't been able to find a trigger. These spells are really bothering me lately and they have me a little concerned. Other background info-DX with POTS-, possible EDS, possible small fiber neuropathy although QSART normal. I will be seeing a great POTS doc again in June for his recommendations and he said we will talk about this, but I need some guidance now.When this happens I feel like:My throat right below my Thyroid is being squeezed and that I am not going to be able to breathe. Feels kind of like something is pressing in on each side of my trachea.I can take a deep breath without any trouble but still feel like I'm not going to be able to take one. I cough repeated when I'm going through this. Throat gets sore from all the coughing.I feel like something is in my throat.Swallowing difficulty is worse during this time. Even on a good day,I have trouble swallowing or making a swallow start. Much worse with liquids and foods that aren't real solid like mashed potatoe. I feel like I'm going to choke if I don't have the liquid positioned just right when the swallowing action first starts. (I do choke very easlily.) Seems to involve my tongue and the muscles under it. I've seen ENT, neurology for this and they can't seem to figure out why I have this trouble.I get hoarse after a spellI have to burp alot during a spellWhat I've noticed during these spells:HR is usually normal or a little high when this is going onMultiple muscles in my neck(front and back) and throat and under chin are very tight. I can touch several very sore spots.BP normal 110/70First spell happened within 36 hours of first dose of MetoprololBenadryl helps. Xanax didn't. ( ER doc tried me on this and it didn't help.)Doesn't feel like a panic attack although it sounds like oneTests/Observations:My O2 sats are normal. Chest Xray, CT scan of chest, Ultrasound of carotid arteries, are all normal. My CO2 runs a little low which would coincide with Hyperventilation Syndrome. (Google is a wonderful tool.) C1, C2, C3 are all out of whack; C4-C5 have spurs. My PT says my neck is a mess. Possible EDS, but I don't see genetics til June. Also I have Fibromyalgia.What I'm wondering:Does this sound like hyperadneragenic POTS? I haven't been told what kind of POTS I have but the report from CC mentions beta-adneragenic something or other.Could this be Hyperventilation Syndrome?Could I have reflux?Does anyone know what kind of a doctor I should see for this and what tests I should have done? For those with EDS, does this sound like an EDS problem since my neck/throat muscles are so involved?For those with MCAD, (especially Mack'sMom), could this be MCAD? Other info on this: 24 hour urine histamine level high-141; IgE normal(actually very low-but within normal limits) and doesn't show any allergies; Endo says no Mastocystosis because 5HIAA or something is normal; I don't really get flushed when this is happening. Benadryl helps but I don't know if this is because maybe it just calms down my system.Sorry this is so long but I wanted to put as much info on here for everyone to make it easier to answer my questions.Thanks so much for just being there. Although I haven't done much posting, I try to keep up with reading everyone's posts and have learned so much. Usually I don't have to ask my questions because someone else has already beat me to it. Hope all are having a great day!Babette Quote Link to comment Share on other sites More sharing options...
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