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ScaredSingleMamainMarylandParticipant
I think the flushing very well could be from mast cell issues or allergy related events. Did you ever track if there is any pattern to the flushing? Do you take Zyrtec and Zantac or other antihistamines? Excessive yawning may be a lack of oxygen in the blood or a vasovagal reaction. Your other symptoms make it sound like bad dysautonomia/your nervous system is in overdrive. I am so sorry you are going through all this. I hope you feel better soon!
Ang.
ScaredSingleMamainMarylandParticipantThe Dr. thinks Klonopin will calm my heart rate and BP and help w/abnormal electrical activity (I have been diagnosed with complex migraines and an EEG suggests epileptiform activity but the Dr previously assumed it was from migraines; however multiple family members including my daughter have epilepsy). Since the Valium helped me I am willing to try the Klonopin. My Neuro. knows a little about EDS but not a lot. If I would ever be diagnosed w/EDS (as my sister does have) I would want to see someone else to follow it. My sister’s Geneticist is knowledgeable of EDS but it takes 9 months or longer to get in to her.
Ang.
ScaredSingleMamainMarylandParticipantThank you for the reply! It seems like I go thru phases where eating anything ore than a small snack triggers symptoms. Then I wil be okay for a while. I have to try to better track if any certain foods always cause me trouble. Lately, everything from pizza, to sandwiches, to a milkshake, to steak ad vegetables, etc. Have made me. Feel worse afterwards. I had wondered if it was something to do with digestion and maybe not as muuch the certain foods. I have eaten these same meals before with no problem and like I said it comes in phases (a few days to a week or two where I feel worse after every meal) and then for a few weeks eating causes me no issues. Anyway, thank you again for the replyq I am going to look into the info youu suggested.
Ang.
ScaredSingleMamainMarylandParticipantBarbara,
Yes, that does tend to be thhe case for me 8/10 that my diastolic pressure is above 90 when I hhave chest pain. My diastolic pressure has been as high as 150 before. I do have a narrow pulse pressure I would say 6/10 times when I have the chest pain. That is a great observation. I know my sister has consistently low blood pressure and her pulse pressure is always narrow.Ang.
ScaredSingleMamainMarylandParticipantHello again! I get chest pain quite often and often when I use my pulseox or bp cuff during these times I have either tachycardia or an arrhythmia showing. I hope you feel better! For me laying on my left side sometimes helps. I can understand what you mean when you say you are traumetized. To have so many symptoms and feel like your being so limited by illness that is hard to relieve and can be very unpredictable is very difficult to deal with. I find myself being very depressed about it. I have been out of work since March and struggled to get medical assistance and am financially burdened and just dealing with all this and my mom has stage IV cancer, my sister has EDS and dysautonomia, my daughter has autism, epilepsy and she is starting to have a few POTS symptoms and my niece is getting severe frequent migraines (we all live together)….it is all just very overwhelming. I try to remind myself of the blessings I do have in my life and to take things minute by minute because really that is all I can be sure of. I am here if you ever want to talk, just message me.
ScaredSingleMamainMarylandParticipantHello! The clear fluid can sometimes be CSF I think. I am not sure how to be certain. I would guess if it is clear and thin and there are no indications of allergies. I hope you feel better and find a Dr to help you soon!
I know my resting heart rate is extremely variable. It can be anywhere from 58-135 usually. I would say my average resting heart rate is 90-115. As far as during what I call attacks my heart rate has been as low as 24 and as high as 250. This is certainly no fun. I can probably list 30 symptoms or so that I have.
Again, I hope you get relief soon!
~Ang.
ScaredSingleMamainMarylandParticipantHi Trent’s Mom! I am praying for your son. I hope that he does not have EDS and that his health problems improve. However, I think you may be right about the connection. It is horrible someone his age would have such health concerns thus far. Def. stay on top of any symptoms he has whatsoever. I am also sorry to ear you are going thru all these symptoms. I have POTS/Dysautonomia and it is horrible. I am so sorry you have not had a Dr. to navigate the way with you. I pray you find a great Dr. who will care and will do his/her best to help you get relief.
Ang.
ScaredSingleMamainMarylandParticipantI am so very sorry your daughter has to go through this. I am so sorry such a young person must suffer. At 32, I am starting to get extremely depressed dealing with all my symptoms, being disabled (unable to work or do much of anything fun or even care for my daughter at times), and worrying about my prognosis. I cannot imagine being so young and dealing with the same. I have only officially been diagnosed with POTS Dysautonomia since April but I have been suffering 3 years. I have honnesly had trouble finding help with my heart rate (which jumps from as low as 24 to as high as 250) and blood pressure (which tends to be very high at times and only dropped very low several times that I am aware of). At first the beta blockers helped (two kinds tried) but then the symptoms and tachycardia came anyway. Drinking lots of water sometimes helps. Oddly, wearing a soft cervical collar has helped some recently. Taking my time to get out of bed in the morning (when I wake I have to lay for about 15 to 30 minutes then slowly sit up and sit for ten minutes before standing then take it easy the first hour I am moving about). Laying on my left side sometimes helps. Sadly, the episodes of tachycardia with some bradycardia and hypertension still come and usually when I least expect it, though I know if I am sick, get less than 9 hours sleep, have my period, or am very upset/stressed that I will have trouble guaranteed. Anyway, I really hope and pray your daughter finds relief. I wish I knew some surefire ways to help her. I wish your family the best of luck and renewed health.
Ang.
ScaredSingleMamainMarylandParticipantThank you Teri! I am so sorry you have had to suffer so long. This nausea and stomach virus symptoms on top of my heart rate fluctuations, BP fluctuations, dizziness, migraines, vascular swelling in my arms and legs, presyncope, etc. Just pushes me over the edge. I am completely nonfunctional. Anyway, thanks for the info and I hope you find relief as well!
Ang.
ScaredSingleMamainMarylandParticipantThank you for the support! I hope you feel better soon. It is certainly horrible to feel so sick.
June 17, 2012 at 8:46 pm in reply to: New Here – History Of Mvp, Syncope, Pots, Possible Mast Cell #2444ScaredSingleMamainMarylandParticipantHi Tristessa! I just started here recently. These symptoms sound a lot like mine. I have officially been diagnosed with allergies, anaphylaxis, SVT, asthma, GERD, IBS, AUB, Fibromyalgia, migraines, partial seizures, neuropathy and POTS over the years. I began having some symptoms (mostly bone pain and horrible fatigue) as a teenager, then I began w/anaphylaxis after my daughter was born, in 2009 my cardiac symptoms began (ran in cycles), and then as of February of this year everything just started going downhill real fast. Right now I am house confined other than grocery shopping and doctors. It is horrible living like this (though of course I am grateful to be alive) but worse real recently my nearly 9 year old daughter has began with POTS like symptoms : * ( At any rate, it is nice to “meet” you I am ye and I will keep you in my prayers. I hope things get better for you. I am here if you want to talk.
Ang.
ScaredSingleMamainMarylandParticipantThank you! In addition, I just requested my echo report from 2 years ago for the geneticist office and I see that though the Dr. Told me the echo was normal, it states I have tricuspid regurgitation and a slightly reduced cardiac ejection fraction : /
June 13, 2012 at 8:04 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2421ScaredSingleMamainMarylandParticipantVery interesting! I do get this type of pain quite often. For me it seems worse as the day wears on. The pain is horrible. I put muscle rub on my neck and shoulders and when I have been able to get a massage it does help while I am being massaged but as soon as it is over the pain is back full force.
ScaredSingleMamainMarylandParticipantSomething weird that happens with me is when I get IV fluids, my abdomen gets really swollen and it takes about 3 days before it is back to normal. I also get swelling in my hands and sometimes feet.
ScaredSingleMamainMarylandParticipantThey worded it as “because of your continued absence”….
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