thejohnsongang

I have had POTS since my teenage years. I was Officially diagnosed until 2009. Every fainting spell has always had the same signs and systems in an exact order. So dizziness, nausa, heat in stomach that moves up my body. Massive sweating and then fainting. I've always had time to get to a safe place. Yesterday for the first time ever it was different. I didn't understand my symptoms until after passing out. This one started with horrible pain in the upper stomach/gallbladder area. ( i no love have my gallbladder) it was intense pain that i first though was indigestion. It then got to where it was making it hard for me to breath. Then every muscle in my back got so tight and ridget that i had to sit down. Thats all i remember. I had apparently got up to go to the restroom to splash my face. As soon as i took 2 steps i fell. None of my normal signs. What I'm concerned about is the amount of pain i felt. It felt like i was having a heart attack. I just did my yearly cardio tests in December and everything was normal. Has anyone else had their auras change? Had anyone ever had a syncope spell like this one? Yes i will be following up with my Dr tomorrow, i was just trying to see if anyone else has had this

After 12 years of struggling with my POTS I have now started to have high blood pressure. Earlier this year it started running high.180/98. It spikes at times to 205/132. I went to my cardiologist and have had a series of test over the past month and I have another in December. My PET scan showed no blockages, but did show hardening of the arteries. He said this is caused by scaring of the vessels due to the stretching of the vessels. Other wise from the pooling of blood. He said this is the long term result of having POTS. Currently I am only on metropol for my tachycardia. I return to him the end of December for the results of all of tests and hopefully a plan. I am worried about the onset of early congestive heart failure. I am only 46 years old and it seems horrible to be at this stage already. Is anyone else having the same issues? Are there any studies showing the long term effects of POTS? Are there stages we will go thru? My brain fog has been horrible the past year and I can't recall seeing or reading on the long term effects, but I am very curious. Thanks for the help. Nolie

I am saving up to get a cooling vest as my insurance won't cover it. I use ice packs and wet towels. If I know I want or need to be out when it's hot I pack a cooler of hand towels coveted in ice. Add a little water. I wring them out and place them on my neck, back face and head as needed and switch them out often. I also put ice packs right on me when I get really bad. I keep the Ac on 70 in our house as well as use a fan directly on me when trying to sleep. Sometimes I add the ice packs too. I prefer the gel ones that I can mold to my body as needed.

Thanks for the imput. I have passed out several times due to my Pots but no one has ever witnessed it until last week. It's the first time my hubby saw me pass out. I have never seen neurology, my PCP and cardiologist have always treated me. None of my syncope episodes have ever been caught on test. Not even my TTT. I have never heard of the term convulsive syncope until now. I will have to do some research on that.

I experienced my first seizure this past week. I have been battling my Pots and fibro for over 10 years. I though I was doing better. Has anyone else has a seizure when they have fainted? Mine was right before I fainted. Very scary for me.

Hey everybody. I'm finally back on line and slowly catching up on all the posts. It has been a horrific couple of months here in Maryland and I'm glad to say that I have survived thus far. I haven't really been on line since the beginning of October and I sure have missed all you guys. The support I get from all of you is wonderful and doesn't compare to anything else. Since I have last talked with you all...lets see....The end of September our family took on a new family member. My niece Brittany came to us under a protective order from the state child protective services. She was 16 and has since turned 17 with us. We were in court every 1-2 weeks until the middle of November fighting for custody of her and we finally won. She is ours until she turns 18. She has had a horrible couple of years and came to us with many issues and baggage. She had been sexually abused by her neighbor, physically and emotionally abused by her father (my brother) as well has told to drop out of school and abandoned by her mother. She has never been protected or truly loved and has mostly raised herself for the past couple of years. She had a history of violent outbursts, mood swings, and being a cutter. She had been in and out of a mental treatment center for the past year and her father was trying to have her committed to a group home as he could no longer deal with her. Since coming to live with us, she has stopped cutting, goes to therapy weekly, has a mentor at school and will graduate this June. She has made long strides in her treatment and works daily to overcome what she has gone through. She considers our household normal But I guess it is compared to what she was use to. Any way she has fit in beautifully with only minor flaws that are to be expected with all the trauma this child has gone through. She is on medication finally and doing wonderful. She underwent surgery December 27th to correct a bone deformity in her knee that has been neglected for years. We got her glasses (the first time she has ever had her eyes checked) and took her to the dentist...her first trip in 5 years. Needless to say we've come a long way with her and still have a long way to go. Along with this my daughter Anna has been having problems with her Von Willebrands as well as her pots/nmh. She has been in the ER 2 times in the last month and has lost 10 pounds. Her family doctor is running test to try to find out what is wrong, but I'm very worried considering all her chronic health issues. Keep her in your prayers for me if you will please. The to top off the hat, my husband is going to the doctors tomorrow. He has a hernia that needs to be fixed as he is so uncomfortable he can't stand it anymore. He doesn't even have health insurance.....is goal was to keep me and the kids covered as we all have chronic health problems. So I guess what we get back in taxes will pay for part of his surgery...we'll figure the rest out later. Then on top of that...like it isn't enough already...the trans went out of our car and now we are down to one car.....What a way to start the year off. Anyway enough ranting for now. I just needed to get it all out to people who understand what it's like when the ball just keeps rolling. Hope everyone has had a better year than us so far. Nolie

Jeff, I sent you an e-mail with some information. If you need anything else, please let me know. Nolie

I too have a daughter in High school that suffers from POTS/NMH, CFS, EDS and Von Willebrands. She has missed a lot of school and needs accommodation's for her to make it through the school day.If you want to e-mail me at huzzymay@gmail.com I can scan her 504 plan so you can see what accommodation's she has and how they are written out. Best of luck. Nolie

Tearose, I am sorry for your loss. We all want to keep our friends, but sometimes you do have to let go...if for nothing else then for the better of yourself. It doesn't happen with just friends it also happens with family. I have had to give up my brother over the past several months and am struggling with my emotions about it. He is a selfish person who thinks only of himself and not how he or his actions affect others. His daughter, my niece, is now living with us. My life is to short and my goods days are far and few in between to let a person affect my life the way he has...in a negative way. I try to keep positive people around me so I can continue to grow as a person. There are others out there that can hold us back in life. It's the crab theory. In a pot of crabs that are boiling...as one makes it to the top of the pot to get out there is always someone there to pull him back down into their own misery. So I always try to be the crab on the top of the pot...not the one pulling others down with me. I hope you find a way to deal with your feeling and continue to find positive people in your life. Nolie

Thanks for all your support. I have had problems with depression in the past, but never like this time. It hit me so fast and hard. My family and friends have been great. I am starting to feel better and I am actually going to "TRY" to clean a little today. The pet hair is getting out of control. Tearose...the cookies were awesome. Thanks so much. They fit perfect with my cocoa and warmed me inside and out. Any suggestions for things to do to keep your mind/body busy? I have very little energy and sleep a lot, but the reading, TV and crocheting have just gotten boring. I try to walk the dogs, but they end up walking me. My hubby works all the time and the kids are in school. So I spend most of my time alone. Just looking for some different ideas. I don't have a car during the day so going out is not an option. Any suggestions would be greatly appreciated. Thanks again everybody. Nolie

Well after my breakdown this past week, I've started to look at thing differently. I've been trying to get through one hour and think about what I can do the next to keep my mind busy. I went to see my cardiologist yesterday and I went in for just an office visit to get checked out about by beta blocker, but ended up spending the whole day there. I've been having so much trouble with the breathing and he said he didn't think it was the beta blocker. Being concerned he ordered an immediate stress test and nuclear study. Feeling as crappy as I do I had to try to do the treadmill stress test. I talked with the guy "Randy" that was going to preform my test as well as my doctor about the probability of my passing out during the test as I had failed my last one. They reassured me that they would be right there with me. My cardio wanted to check to make sure I didn't have any blockages. I was alone of course as my husband was at work and scared to death. I called to let him know what was going on and he was very upset that his employer wouldn't let him off work to be with me. After a good cry, I decided that I was going to do this. With "Randy" the tech right beside me helping to hold me up and my cardio right behind me in case I fainted and this little tiny tech that was all of about 4 ft high I started my test. The goal was to get my HR to 156 (or 6 1/2 min)on the treadmill or If I couldn't then they would give me an injection. They coached me on how to walk properly on the treadmill without exerting to much energy and I actually made it. It was such a big deal for me even though none of them really understood my excitement. Turns out all my tests were fine, no blockages or anything...What great news. We did lower my beta dose in half for now and he wants to see how things go over the next 3 weeks. If no change then he wants me to follow up with him and with my PCP. Since being on the sedative and anti-depressant for the past couple of days, I'm starting to feel calmer and in turn handling things differently. I know it will take a month or more for the anti-depressant to work, but the mild sedatives are a huge help. The kids have been really great and my daughter even asked if she could buy me dinner so I wouldn't have to cook. But as much as I appreciated it, I didn't want her to use her hard earned money on me and I just ate leftovers. She's such a great kid. My hubby has been wonderful and has been making time to just hug and hold me before he leaves for work and when he comes home. He's been calling me as much as possible during the day and just checking on me. Then my girlfriend Michelle must have a sixth sense as she has been calling me like crazy and talking to me for hours on end. We are going to try to meet up on Saturday and spend some girl time together doing something. She was thinking tanning and lunch...but I don't like tanning booths as I burn easily..so we decided on lunch and window shopping for as long as I can handle it. So things are starting to look up a little and the crying is getting better. Having a chronic illness is just so hard to deal with. This site has been a godsend to me over and over. Everyone here really understands as they are going through the same things. It just nice to know that there is someone out there at truly understands. Thanks for all your support and hopefully soon I'll feel up to reading and posting on a regular basis. I have a lot of catching up to do on reading all the posts. Thanks again guys. Nolie

Hey all. It's been a while since I have even been on, let alone reading posts. I have been having a horrible time with depression lately. I finally got to the breaking point and went to see my doctor yesterday. We had a good long 1 1/2 visit and did a lot of talking. Come to find out some of my issues with my health are being caused by my beta blocker dose being to high. I go to see my cardiologist tomorrow to adjust the dose. I've had so much trouble breathing and I thought it was just a cold, but the PCP says I'm clean and clear. He said the beta blocker I'm on, when given at high doses) can cause breathing constriction as well as stuffy clogged nose. I was shocked. I talked to the cardiologist office about it today and they are squeezing me in tomorrow. So hopefully we can adjust my dose or change to a different one that has less effects. Over the past month so much seems to be getting to me. I cry at the drop of a hat or if someone looks at me the wrong way. My hubby is working 2 jobs to try to make ends meet which leaves me home alone most of the time. We get to see each other for 1-2 hours a day and that's it. I'm use to having him around to help and to talk to when things get to me, but I haven't wanted to put that on him with everything is trying to do for us. He's working 2 ft jobs and thats a lot to ask of anyone. He gets very little sleep and I just want him to sleep instead of talking to me right now. We did talk last night and he is changing one of his jobs to pt if he can. He is going to talk to them today about it. I'm just so down I don't know what else to do. I sit on the couch and cry most of the time as walking even into the kitchen makes me so out of breath I have to rest for a good 20 minutes when I get in there. I have even gotten to where I don't feel like taking a shower or getting out of my PJ's. I'm just out of it. My PCP started me on prozac (as in the past other meds for depression made it it worse) and he also started me on clonazepam until the prozac kicks in. He also told me if I felt any worse to call him right away and he would fit me in no matter how busy they were. I've never felt this bad before. I've had depression in the past but not like this. I just feel so useless and that everything is just so hopeless. The holidays are coming up and I usually love this time of year, but this year I could care less. I've been trying to keep it all hidden from the kids, but it's hard to do sometimes and my daughter knows something is wrong, she took me out to breakfast (her treat) and has been trying to cheer me up. I just don't know what else to do to keep from feeling so bad, so I thought I would try writing here to see if anyone has any ideas until the meds start to work. I haven't been able to enjoy anything that I use to anymore. Reading, TV, movies, crocheting, our pets, my friends, baking, etc and the list goes on. I just lay around in bed or on the couch most of the time and just think. How can I stop it? Any ideas? I just can't believe that this is what my life has come to. Being so sick, fighting for disability, swallowing all those pills and still being in pain all the time. Sorry for rambling on, I just need some good advise from people that are there or have been there. To put things bluntly, things just suck right now and I need to deal with it, but am having so much trouble getting my mind to do just that. Nolie

Thanks, I am a very proud mom. Knowing where we were a year ago with her and where we are now is night and day. Such a huge difference. At first I was so mad and upset that I passed this disorder on to my daughter, but how she has handled it is a blessing. She always looks on the upside of things. Her statement to her doctors and friends is that I am a 16 year old and no matter what health issues I have I will "BE" a 16 year old. I will not slow down in my activities and you will just have to work around that. I commend her for that. She has seen what this disorder, along with others, has done to me and she plans on living her life her way even if it kills her. Its hard at times to get her to understand, but she is managing it well with very little help from me now. I'm very glad that her doctors have worked so hard to find what works for her. I have lost so many things in being sick myself and the only thing I make 110% effort in anymore is being a mom. I give 100% to my health and the rest I deal with when I can. I don't sweat the small stuff anymore like the house and stuff. If I have energy it gets done, if I don't it can wait. Life is to short not to.

I know CVS carries Thermo tabs. I have to ask the pharmacy for them as they keep them behind the counter. See if your local CVS has then. I understand your frustration. I happen to love sea salt and put it on just about everything. I hate taking pills and at 13 a day right now I don't want to add the salt tabs, but I keep them on hand for the days I just can't eat. My daughter used to take the salt tabs, but now prefers the dill pickles. 2 full size dill pickles a day is what her doctor told her. think we are the only family that buys a huge jar every week at the grocery store. I hate going to the store anymore. Everything is marked as low sodium....whats going on. Yes some people have high BP like my mother, but what about us that have low BP. We need our own brand of a high sodium food line. That would be nice to see, One section of the grocery store dedicated to high sodium foods. They have organic, gourmet, allergen, ethnic...why not high sodium??? Now that would be nice to see. Anyway, good luck at finding your salt tabs. Nolie

Thanks for all the input. Anna has been on Zantac since March of this year for the acid reflux. Dr. Rowe put her on it at her first appointment with him. As soon as he seen the mouth ulcers he knew what it was. Her treatment hasn't changed much, we just have to be certain that she takes her meds as prescribed and not miss a dose or be late. She is currently on Florinef .1mg 1x a day, Potassium 10 meg 1 x day, clartin 10mg 1 x day, yasmin 28 1 x day, periactin 4mg at night, migrelief 2 x day, melatonin 3mg at night, clonidine .1mg at night and sucralfate 1gm 2 x day am & pm and liquid carafate when needed during the day. She also takes zomig 2.5 mg when needed for migraines. Dr. Rowe bumped her fluid and salt intake. His joke is 2 pickles a day keeps the doctor away. He said 2 dill pickles a day will give her enough salt. He added the Sucralfate (carafate in pill form) in the am and pm and if she has any problems during the day she can take the liquid carafte as soon as she feels symptoms. He never restricted her on when she could take it so she takes hers with her other meds right before she eats. The sucralfate has worked wonders for her and she now eats all the time and keeps it down. She is more regular with her bowel movements and isn't nauseated at all. She gained 6 1/2 pounds in less than a month so Dr. Rowe cut her periactin dose in half and if she has gained more weight when she goes to her PCP on Monday then she can cut it out all together. Her EGID is GONE!!!!!!!. She outgrew these food allergies and there were no eosinophil cells left to justify any allergy treatment. That is a godsend its self. On the down side she will have to take the carafte in either liquid or pill for quite a while if not the rest of her life, but on the upside she is better and back in school full time. She's also working and managing about 20-30 hours a week on top of that. Her migraines are better on the migrelief and he added the clonidine on the 10th of this month. She seems to be doing better, but still has the daily headaches that don't bother he to much. Her PCP is suppose to start amitriptyline if she is still having them on Monday. Seems like we have gotten so far and only have a little way to go. She looks so much healthier with a few pounds added. She likes it also. She said she feels better and has more energy. She doesn't like the taste of the liquid carafate, but takes it as she know it helps. Shes back to her old self again and it sure is nice to see. We are now on yearly visits with Dr. Rowe unless it is needed sooner. He works very closely with her PCP and it sure helps not to have to travel so far. She got her drivers license and is out and about like a normal teenager. I only worry about the Von Willebrands, but she knows as does her friends. We are trying to decide on a medical alert bracelet for her and she can't decide what she wants. So we might get her a couple...a bracelet and a necklace so she can decide with what she is wearing. She's looking forward to softball in the spring. So all in all its better than it has been in a while. I was just curious about some of the dr lingo as I don't know it. Thank god for the internet and webMD. They get me through so much. Julie...funny how our kids are so much alike even in their treatment. I'm just wondering if she should be on something stronger for the Barret's esophagus. I know it can be dangerous, but I feel Dr. Rowe would have started her on something stronger than the Zantc if it was needed. I will talk with her PCP on Monday and see what she suggests. Nolie