Jan

When I got POTS, my marriage was a mess, and I had a lot of job stress. Then I got a "virus" they thought was the flu. I never recovered. I really was under the worst stress I have ever had in my life. I always wondered if in years past they would have said I had a "nervous breakdown".

I have a spray bottle that is a mixture of soap and water that I use on things that don't go in my dishwasher. I take it outside with me when I am weeding my flower garden or when hornets are scoping out my front door area to nest. If you spray them with it, their wings get too heavy to fly and they drop to the ground. I stomp on them when this happens, you might have to wheel over them. I like this better than insect spray which I think is as deadly to humans and insects.

I went one year the week before Xmas. Friday was Xmas eve. My last test and then the final consult were scheduled for Friday but with little kids at home with a friend I wanted to be home by Friday. They gave me this schedule of appointments that made me feel like I was in an airport either waiting for a flight, or running to catch one. When ever I had a few free hours, I went to the site of my last scheduled test, signed up for a cancellation and got in. I got my Friday test done and my Thursday afternoon tests done ahead of time, so I went to my primary doctor on Thursday afternoon, said I was done with tests and got to see him. I was able to leave after that. They had me fast before my first appointment in case I needed a fasting blood test. It turned out I wouldn't have had to fast but you don't know until after you see the doctor and he decides what tests to run. By the time I saw the doctor, and went to the lab, I was about to faint from fasting, and the lunch room was crowed. I almost started crying in the lunchroom line. I recommend bringing some food and drink along if they make you fast. I was not very happy with their follow up with my primary doctor back at home. I would recommend asking them very directly if they will work with your home doctor, and insist they do. Also, I was given a doctor in Internal Medicine who wouldn't refer me to the infamous Autonomic Clinic that specializes in POTS. He said he knew as much as they did. I would INSIST on going there if that isn't where you are going initially. He did NOT know as much as they did. I went back a year later to the Autonomic Clinic.

I would call the pharmacy and ask them. My real question is where were you that has the heat on?

I am thinking that if the crease if due to poor circulation, that people with POTS might have it because we have poor circulation rather than a bad heart? Wishful thinking? I really did not want yet one more thing to worry about.

Personally I think it is a problem with gravity. I am not sure why it doesn't effect those around me, but it definitely is too heavy where ever I am.

Isn't that cute. My week from "heck" was turned into **** I had no idea that was a bad word. I have been away from this board for too long I guess.

I was told BCP's can raise your blood pressure, so stopping them might cause a dip in the old BP. I have been on BCP's most of my life. I was most recently on them without the 7 day break to stop getting migraines. I went off them in January, and appear to be in menopause. All I can say is that I will take hot flashes over migraines any day. I just want to tell people, that menopause has really been a blessing. I was so much sicker during my period, and had to go off the BCP's every few months due to break through bleeding. I do have to say that stopping them was a week from ****, with dizziness and headaches.

I have done a lot of reading on this. I would love to read something that says it isn't true. I did see some doctors post things 10years ago saying they had doubts, but then I read there have been 30 studies saying it is true. A better indicator than blood pressure, cholesterol, family history etc. I just wonder if POTS, rather than heart disease could cause it for some. You know there will never be a study done for us.

I wish I could walk away from my illness. My husband did the same thing. At first I was in shock. After I adjusted, and figured out how to get groceries and such, I feel better than when I lived with him. Honestly, the pressure and guilt and stress is gone. It did take awhile to adjust, but I know it is for the best now. I hope you the best and that what ever happens, it brings you peace.

This sounds really stupid, but a friend of mine with POTS told me that having a crease in your earlobe is a sign of heart disease. She had heard it somewhere and then saw it on TV. If you google ear lobe crease you will see what they look like. Nothing a person would normally even notice. If you read about it, all research supports this theory. My friend and I both have these creases. She went to a cardiologist who said, yes, they are an indicator of heart disease. He of course knows nothing about POTS. The common theory is that the ear has a lot of blood vessels and the dent indicates poor circulation and that the heart isn't working so hot. I wonder if POTS, which causes poor circulation would be a cause of these creases. Any one else have an ear lope crease?

I also get menstrual migraines. My doctor recommended doing almost exactly what you have done. Only not to start the ibuprofen until the day the headache usually starts and then take it every 6 hours until the headache goes away. I don't take it every six hours unless the headache comes back and stop when it doesn't. I have never had a rebound problem. I also found adding caffeine helps. It does make sense to maybe start a bit closer to your period or the time when you usually get your headache so you don't have to take it for as long. And quit when your headache lets up. Make sure you take it with food if you take it that much as it is harsh on the stomach. Some suggest weaning yourself off of the med that is causing the rebound problem as a way of getting through it. The headaches you are having now may or may not be due to rebound. It is really too bad that you are still having head pain since it seems like the ibuprofen worked really well during your period.

If your headache gets really bad, and it will only do this while you are upright, you can go in and get a "spinal patch." They draw some of your blood and put it in your spine and it clogs the leak. It is immediate relief. My understanding of why you have to lay flat is like when you get blood drawn and they put pressure on the point where the needle goes in, laying flat does some the same. The headaches are caused by a leak of spinal fluid.

Personally, for me, I feel like counseling to get through anxiety is like counseling to get through a seizure. For me anti anxiety meds helped. Counseling was totally useless. I am not saying that counseling isn't helpful for some people, I am just saying that while it might help coping skills, I don't think the kind of anxiety most of us have can be controlled by counseling.

I often think these types of boards can have adverse effects on people. For example, really really sick people might ask things like, whether they should go on a trip, have a baby, look for a job and people try to be encouraging when I think that being blunt and saying something like, "You sound too sick to....." might be better advice. I also see people complain about things that healthy people complain about, like forgetting things, anxiety, pains in joints, etc. and here they are taken very seriously when in real life, friends wouldn't think they were a big deal and might just say "I get that too" and because they don't have POTS, it is considered normal. I know that happens with my card group a lot, things that are frequent complaints here, are also frequent complaints among my "healthy" friends. It just isn't considered a big deal. Then there is a small percent of people on boards like this who aren't sick physically but get off on pretending to be. You can pretend they aren't here, but they are. Their advice is usually accompanied by their own very sad story. I think those people make us all feel worse. I think for many people, including myself, I like to make people feel better and offer support because it makes me feel better so maybe that does encourage people to think about their illness more. I have a friend with POTS who refused to go on any boards because he was just going to focus on getting better and didn't want to know all the things he had to worry about. He is 98% well. I can't say that about myself.

I also take Ativan in stressful situations, like before flying, just to make sure I don't panic. If you can get a prescription, be sure to try it a couple of times before the wedding to make sure it doesn't put you to sleep or something. One thing that helps me is to think of the worst case scenario. The wedding lasts an hour at the longest. No matter how you feel you should be able to last an hour. If you faint, there are lots of nice people around to make sure you don't get stepped on. You won't die, no matter what. If it were me, I would have a wheel chair attendant standing by. If you can walk up the isle, they should have a real chair for you in front. Then you can stand as long as you can, and then sit from time to time during the service. I know standing in one place is the most difficult thing for me to do. If you can't walk up the isle, your "attendant" can be there with the wheel chair. If you can't walk down the isle, you can signal your attendant to come to your rescue. Personally, I think working on walking would be a great exercise for you. A Mayo doctor advised me that we have to train our bodies to be upright and walking is the best way to do that. Baby steps. If you walk and increase it one minute a week, you will be walking 40 minutes by June. I also think swimming is useful. I think everyone gets nervous about being in a wedding. You'll do fine and the worst thing that can happen is you can say at least you tried. The best thing would be you had a great time and looked stunning. Weddings are a good place to meet a future spouse.

Caffeine is a very mild diuretic, especially in sodas. Athletes used to be discouraged from drinking sodas while working out but now it is considered fine by many doctors. If your heart rate goes up with caffeine, then is should be avoided. If not, there are benefits to caffeine. I gave up caffeine for years when I first came down with POTS until a Mayo doctor suggested that it is a vasoconstrictor and helps many people. I found it helped me stand longer, feel better and helps control headaches. It has really helped my level of functioning. So do what is best for you. I drink soda in a glass with ice so it gets pretty watered down. It is probably better for most people not to drink it on an empty stomach. Sounds like it wasn't something that agreed with you that well anyway, so there are probably better sources of calories for you. I just don't want people who might benefit from caffeine to be scared off by those who are adversely affected by it.

Recovery is possible. I have a friend with sudden onset POTS who is back to normal. He missed 6 months of work, went back part time for a year or so and now is fully recovered. He is even riding his bike in marathons. He still makes sure he drinks a lot of liquid, eats salt, and avoids mowing his lawn in the heat of the day. Not bad if you ask me. You aren't going to find people who have recovered on this board because they are out having a life.

I agree with everything Sunfish said. People make comments everyday that accidentally hurt other people. If they don't mean to be offensive I think you should just forgive them for being ignorant and move on. And hope when you offend people they are equally as forgiving of you. For example, in your first post, you said quote "seriously, you never hear comments (at least i dont) about people that are over weight, and i work with plenty of them -- and they never get picked on and harrassed about their size. it annoys me because i cant do anything about how skinny i am because my stomach is messed up" I personally found that offensive. You are commenting on people being over weight. Why? How do you think that makes a person who is reading this board and is over weight feel? Is it any different than the comments you get? Do you think being over weight is a bad thing or worse than being thin if you are wondering why people aren't being mean to them? Then by saying you can't do anything about being skinny you are implying overweight people can do something about being overweight. There are many reasons people are overweight, many can't do any more about their weight than you can. Yet I am relatively certain you didn't mean to be offensive. You also said you were offended when a doctor told you that you looked great. I know that since I have been sick I have been emotionally fragile. It seems like body image is an area where you are very sensitive. You aren't going to change people, the only thing you have control over is yourself. I suggest you work on accepting yourself for who are, and accepting that people who mean well can hurt your feelings.

When I had to put on weight I drank Slim Fast. It is the same thing as ensure only not so THICK. It is milk based so if milk is killing you for some reason, they might have a soy based one? Ice cream was also a main stay in my diet. Vanilla shakes would go down when nothing else would. Good luck.

I will have good days and then out of the blue have a day just like you describe. I have the tight throat and am always trying to think if I am having a reaction to something I ate. I have had that feeling like I want to go to sleep, but not really, like I can barely keep my eyes open but I'm not tired in the normal way. Hard to explain but I think it may be what you are feeling. Sometimes taking Advil helps, which makes me think that it might be a migraine without the pain? Or maybe the Advil constricts the veins. Of course sometimes it doesn't help at all.

I think I have a small esophagus also. I have chocked on things and had to have someone hit my back or hold me upside down a number of times when I was a kid. (this was before the Heimlich was invented). I have to take small bites and chew really well. Even then I have had stuff stick. I had a small pill stick one time and the doctor told me he thought it could be a spasm that caused it to stick, then it swelled from the moisture and was really stuck. I don't know if it is related to POTS at all.

Lorazepam

Before I was diagnosed with POTS I was given Amitriptyline for nausea. It's side effects include hypotension, tachycardia and dizziness. It made my POTS symptoms much much worse. I could barely stand up and blacked out for minutes every time I stood up. Once I was diagnosed with POTS, the doctors took me off of it and said it should not be prescribed for people with POTS. I was given Compazine early on and it didn't help. Looks like I was typing this just as the above post went up, I guess mine is just ditto to the above.

I have known many brides to be and mother's of brides to be who go completely insane when planning a wedding. My cousin was expecting me to go to her daughter's wedding, on the other side of the country, when I can't travel to the other side of town and was wondering if I could even afford to send a gift. And I barely know the bride. You have explained to your "friend" your situation. That is all you can do. Decline, no guilt. After the wedding wears off, she may return to sanity. Most do. For now, give her the benefit of the doubt. Even people who aren't insane with wedding fever don't understand our limitations.