castronovo112587

I've never passed out before neither. Has anyone never passed out till the ttt and then started to get fainting episodes after because of the fact?

Have my tilt table test tomorrow for official diagnosis. I know I have it because my heart rate laying, sitting and standing has been monitored by my thoroughly. I am nervous because the doctor who ordered the test doesn't seem to know much about it and I'm getting it at the local hospital here. I hope they know about it and how to perform the test properly. What should I expect? I plan on going to Mayo once I get the results to find a Dr there to treat me.

Anti anxiety meds have been known to help some pots patients and hinder others just have to try it and see what works for you. My cancer was carcinoid cancer it is very rare and actually causes many of the same symptoms as pots so when I developed all these crazy symptoms after giving birth to my 2nd child 5 months ago they thought it was back so they did many tests and bloodwork. I saw a carcinoid specialist in Tampa and he said based on all my tests he didn't think it was back but mentioned that it sounds like I have pots. He will be doing his own workup to confirm cancer is not back. Gemma my pot came due to pregnancy either that or it came on slowly from my previous health issues and the pregnacy made it full fledged. In my opinion I would not get pregnant many other women have gotten worse after pregnancy and have pregnancy cause it like me.

Anti anxiety meds have been known to help some pots patients and hinder others just have to try it and see what works for you. My cancer was carcinoid cancer it is very rare and actually causes many of the same symptoms as pots so when I developed all these crazy symptoms after giving birth to my 2nd child 5 months ago they thought it was back so they did many tests and bloodwork. I saw a carcinoid specialist in Tampa and he said based on all my tests he didn't think it was back but mentioned that it sounds like I have pots. He will be doing his own workup to confirm cancer is not back. Gemma my pot came due to pregnancy either that or it came on slowly from my previous health issues and the pregnacy made it full fledged. In my opinion I would not get pregnant many other women have gotten worse after pregnancy and have pregnancy cause it like me.

Yes come to think of it I did do more then usual yesterday because I felt a little better and I didn't get as much sleep last night as usual. Thanks guys, hope you feel better soon fainting goat. How are you feeling medic girl?

I never have taken anything for the chest pain bc I do not deal well with any medicine. I went to er several times and cardiologists and when they saaod all was OK structurally with heart I just kind of deal with it. Last week pain got pretty bad one night and woke up the next day OK. If you do feel tenderness on your chest when pressing on it I'm sure a good deal of your chest pain can be due to chostochondritis. Look it up and it can get very persistent and painful I know from experience. Don't forget that pots causes chest pain as one of the symptoms.

Heart rate quiet elevated today. Normally its in the 70s sitting and 110s standing. Today 90 sitting and 130 standing. My face is flushed today but I don't feel really dizzy or anything. Blood pressure lower however. Drinking a lot and eating salty chips

Yes I know it's crazy I'm new to all of this I have a history or cancer but pots has been the last 5 months and I'm finally starting to accept all the crazy symptoms. Before I knew what was going on I had gone to the emergency room like 8 times in a 3 month period. Lately I have had frequent urination added to the least and feeling the urge to go a lot it feels like I have a uti but I don't

Sorry typing too fast on iPad lol

Also from my understanding sometimes anti anxiety meds can make tachycardia worse so maybe it was making your resting heart rate higher and now that your off it's lower. Trust me I am no athlete so that is not why my heart rate is in the fifties. Also if you look it up anxiety can make your heart date lower too I'm not sure how or why as I read it a while ago but I've read about it. They usually don't get concerned unless your heart rate goes below 50 and consistently stays there. Just keep following up with your cardiologist. My mom gas always had a hr in the 50s and hasn't physically fit so I don't worry too much about it

My resting hr is in the fifties laying down or sitting for a while sometimes down to 51. My cardiologist said it's completely normal but I do notice mor dizziness if it's lower. If all of your cardiac tests are ok then I wouldn't be too concerned just probably part of the dysautonomia since autonomic system controls heart rare it can make it lower too just like it making it too high

On November 19 it will be me and my husband's first year wedding anniversary. We have been through so much this first year already. New baby and this whole sudden Pots diagnosis. It has been a roller coaster but we made it through me having cancer before( possibility I may have it back but still unsure) I am hoping I feel well enough to go out for a nice evening for our anniversary. Everyone send some positive energy my way!

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Not that I know of. My a1c numbet was slightly low was 4.7 instead of 4.8 but anytime my sugar has been checked it's been fine.

Gemma, I too get a lot of random chest pains all different and have been to ER several times and cardiologist with full cardio work up. I get the shootKing and stabbing pains as well and sometimes just a constant pain in my chest and shoulder. Have you noticed the pain to be associated with movement? And can you press on your chest to recreate the pain? They say if you can then its almost always muscular skelatel (do not know if I spelt that right) and costochondritis which is the inflammation of cartlidge between joints and cause the pain to be sharp and shooting at times as well as just a constant pain. Medic girl, it's so weired how we are all different when I was on propranolol all my symptoms had started while I was in it and were wayyyyy worse and I wonder if it is what helped cause/trigger my pots.

Yes Margiebee that is exactly what happens with me!

Currently I am just trying to spend time with my kids and make memories on my good days. I just started working again part time and it helps me to get out of the house but it is a struggle when I am not feeling well at all that day. I was just diagnosed and have had symptoms for 5 months upon giving birth to my 2nd child. I hope to be able to dance one day again like I always used to

I have sudden new allegies to everything! I am allergic to wheat, soy, egg, peanuts, and milk as well as dogs, ragweed, saw grass, and mold. I am having a hard time finding what antihistamine would be good for me. I have an appointment with my allergist on November 7 but I want oppinions from here as well. I have read that claritin and zyrec have lactose in it so that is out and that benadryl has traces of gluten in it. I am extremely sensative to medicines as well, I always have been and it's much worse now with this pots syndrome. Any suggestions and what has worked best for you guys with the least side effects? I don't deal well with medicines and was allergic to numerous medicines prior to pots. I've gone into anaphylaxis before at 10 yrs old from medicine allergy.

jbechtold00 I now realize I was having symptoms towards the end of my pregnancy as well. As my first pregnancy was different. This time around I was getting really flushed and sweaty randomly towards the end and having slight brain fog here and there but nothing like how it is now. The high salt most likely shouldn't be a problem so long as you aren't getting hypertension as well and do not have any other underlying heart issues as salt can make them way worse (such as congestive heart failure) it would be a good idea to get a full cardiac work up before adding tons of salt to your diet.

Thank you Looneymom. to be honest I am not sure if I had this as a teenager and didnt' even know it. I have always gotten sick easily and constantly catch different infections and also have had a lot of gastrointestional issues since a teen as well as flushing here and there. However I always had excellent energy and was able to be on the go nonstop and stand all day for hours and go out dancing in heels for hours after. People even used to remark at how much energy I had when I'd dance nonstop for 3 hours straight and go "wow I wish I had your energy!" So I'm not really sure if I was slowly developing Pots and it became full blown after this pregnancy. My first time giving birth went fine with no problems. However, I did find out I had cancer two years later and had 3 different surgeries before becoming pregnant again. In high school I got mono and was out of school for a month and after that is when it seemed like all my health problems started as far as getting sick easily and frequent upper respiratory and yeast infections. However, I have had an irritable bowel for years. I have been tested for many things these last 5 months including lupus, RA and a couple of other autoimmune diseases which all came out fine. I am hoping this isn't due to my cancer being back. Carcinoid syndrome has MANY similarites in symptoms as Pots and it is a very hard cancer to detect because it is very slow growing so I guess I will see as time tells. For now they haven't picked up on anymore cancer and my bloodwork and urine markers for that cancer are fine. I will look into an immunologist. It's frustrating because I am losing my insurance at the end of the month. I should qualify for medicaid as my finances has changed drastically since all of this but as we all know medicaid has not a lot of doctors to choose from. I am interested in getting Mast Cell testing as I do get itchy skin and have a bunch of sudden new allergies.

Does anyone get wayyyy worse during menstration? I am newly diagnosed but I have found that the last 2 times I started getting a lot worse the 2 days before, during and for the whole week after. It's like 2 weeks of pure misery and then my symptoms will start to improve (although not go away) I cannot take birth control neither to eliminate my menstration because of my cancer history.

I was on a beta blocker shortly after the birth due to really high blood pressure and severe headaches. It was propranolol and this was way before I knew what was going on and the beta blocker made my symptoms way worse, I had a lot harder of a time breathing and would wake up numerous times in the middle of the night with an adrenaline rush in my chest and catching my breath. I never had palpitations in my life until I was put on this beta blocker about 2 and a half weeks post partum, that's when my palpitations and all of my other crazy symptoms started. Before that it was just the extremely high blood pressure and headaches. I am wondering if the propranolol played a role in me getting the pots syndrome or making it worse.

Pooling*

I have been struggling with migraines these whole five months since I've had these pots symptoms. Some days it's non stop headaches all day and other days I hardly get any. Mine seem to be related to posture I wake up with one sometimes in the morning maybe from blood posing at night? I also seem to always get one while driving I don't know if this is also due to the fact that I am sitting completely upright. I haven't found much that helps yet. They just kind of come and go on their own and sometimes if I drink a little more water or eat a little somthing salty it helps. Mostly what helps is trying to keep busy and then I won't notice it as much, unless it's a really bad one.

I will look into the Levine protocol. I am getting a recumbent bike as well and will start off really slow. I am determined to do everything that I can to get back to as normal of a life as possible. This isn't my first time dealing with a severe health issue as I have overcome cancer so I am used to being knocked down and having to fight my way back up. I am thankful for this site