futurehope

Hey, all, I went to a visit with my ENT today. I hadn't seen him in four years (that's good.) and my prior visit was prior to my POTS disgnosis. So, of course I launched into my little "POTS spiel" which means I was trying to familiarize him with this ailment in case he sees other patients with it besides me. I always show the POTS brochure from this site. And, lo and behold, he realized I was talking about the same thing that the "yellow Wiggle" has. YEAH!!!!!!!!!!!!!! There's hope that more people will recognize this. YEAH!!!!!!! Again. It made my day.

Get well soon!

I hear what you're saying and I understand. I don't know the "person that you really like" as well as you do, but be careful getting emotionally close to someone who does not understand you. It can lead to pain and misunderstandings and make you feel worse. If this person's your relative, then obviously, you may have to put up with it. I know you didn't ask for advice, but I really am concerned and felt like I had to say something. If you already know what I said, I apologize.

Jacquie, I understand and can empathize with all you've said. I'm not a fainter, but I feel poorly. Sitting or standing causes me problems, as does laying around too much. The truth is, people who do not have this cannot understand how we can look "relatively" okay, but feel like we want to go crawl in a hole in a reclining position. In the mornings or after a nap, I can look like death warmed over because of the low blood pressure, I assume. But on other occasions, like out shopping, I can look fine. Looks are deceiving. No doubt about it. Sometimes I think only people with the same ailment and God Himself understand my every day life and its difficulties. I hear ya! Hugs your way.... At least we can understand each other.

I have strange and unusual heart rate "skips" "palpitations" "racing" rather frequently and without a dicernable trigger. I've learned to ignore it. I've decided that my heart racing at night has something to do with my body trying to keep up my blood pressure during sleep. I think it probably falls during sleep. It's all part of the dysregulation of the ANS as far as I'm concerned. By all means, get yourself checked out by an endocrinologist and whoever is willing to help, but do not be surprised if a cause cannot be identified. Obviously, in some cases, a cause for heart racing is determined and then appropriate treatment can be started. For us, it's dysregulation of the ANS, hence, dysautonomia. I hope you can lessen your anxiety about POTS and all the symptoms it can cause or you are going to live in fear. Hopefully, you'll find a medication that can help. In the meantime, ask us questions on this forum and do some searches as well and realize that you are not alone. Hugs.

I'm so grateful for anything that helps spread awareness of this debilitating affliction. Thanks for sharing the website.

How sad for him. And to think it came on after a hernia operation?! I hope he finds this website and gets the help he needs.

I appreciate you sharing this with us, Megan;you must have had some sort of relationship with Caitlinrose. What a blessing to have had such a lovely, caring person to grace our forum! Rest in peace, Caitlinrose!

Best of luck with the lyme treatment and I am looking forward to you posting and telling us of your improvement. It's interesting that you should mention zithromax, as I just had my second course of it for a throat infection that won't go away. Two 250 mg pills to start, and 1 250 mg pill for 4 days. Two weeks later, I repeated it. It wasn't exactly easy taking it because I got headachy and sick feeling but by the fourth day I was adjusted. Without being aware of it, I had noticed while I was taking it that my POTS symptoms of feeling intolerant to orthostasis was diminished. I don't know if it was my imagination or the pill. Anyhow, my symptoms are back again so who knows. If you know of any lyme doctor that is good is Maryland or for that matter in NC where you went, PM me. Thanks. If you don't, I think I have some names I may look up. Whatever you decide to do, it may not be easy, but it will be worth it when you improve.

Have you considered asking your question on a digestive disease forum? Digestive Disease Forum

Is the medicine doing something positive for you? I'm sorry I'm asking so many questions. The only reason I'm asking is that I noticed it made me depressed.

Did you just begin the atenolol? Is that Tenormin?

Check out this website for Lou Gehrig's Disease ALS. I really doubt you have this though. ALS I would ask for a blood test for myasthenia gravis. I'm positive for that though I do not show symptoms. Myasthenia Gravis It is possible that you have neither of the above and are low on potassium. Was that ever checked in you? What meds are you on? Maybe you are reacting to a medicine or supplement you are taking? I know how difficult it is when you have no idea what's going on.

Have you been checked by a neurologist?

"I honestly just can't wait for the whole season to be over and i absolutely HATE feeling that way. my personality is not generally scrooge-like" Melissa, I'm with you on this one and I can totally relate. I'm not by nature a hermit, but I now prefer it to feeling poorly and pretending I'm fine. Holidays are just one big stress for me and that's the way it is. I would only say it on this forum, but, I can't wait for this season to be over. I'm just not capable of enjoying the intent or giving or anything else because I'm physically unable. So, unfortunately, I've become a scrooge as well. Not my intent. But true. I understand.

This doctor will get his justice in the next life, if not in this one. I would go to an advocacy group and tell them your story. I assume that you would like to get discharged with a disability, right? Because if not, you appear able-bodied and capable of working. Though I wonder if you somehow got your hands on your prior medical notes and showed them what KIND of job it was you could do and why, it might prove your case. I was part-time and reclining before I had to leave work. Apparently, you were not carrying a full-time load of work either, right? I do not understand all the ins and outs, but I would try and see what options you have before "resigning." Can you find out where you former cardiologist went, by any chance. I'm so sorry you are being put through this uncertainty.

I had asked my allergist for the blood test for eggs, wheat milk and I forget what else... the most common ones, and I was negative. I don't think I had the IEe. I think it was IGe. I think it's worth pursuing any avenue if it will help you. Happy Thanksgiving. I hope you're well.

Dayna, Did you notice on the other thread about flu shots that if you have Lyme's disease, you do poorly with the shot? Have you been tested for lyme? I'm just repeating what somebody else said. I really have no idea why you reacted so poorly and I hope you feel better soon.

This was an item I took for a while and I didn't notice anything. Now, maybe it was doing something. I just didn't notice. In my book, it's one step in the right direction if I'm not worse off after trying something.

Tessa, Being as you are anxious about your symptoms because you are not sure the cause, (if you choose not to go to the ER), be sure to say to the doctor that you have concerns about your symptoms and does he/she think this is a medical emergency that needs attending to right away? "Do I need to be seen right away?" "Could this be my heart?" Most doctors here ere on the side of caution to prevent lawsuits. Like one of the other posters said, if you presented with your symptoms in the U.S., more than likely they would treat you as a cardiac patient and give you tests ASAP so they wouldn't be sued for malpractice. Whatever you decide, hang in there and good luck.

I have no idea what a duodenum is supposed to look like and am surprised that you would know what a mottled appearance looks like. Are you a physician or medical worker? I hope everything turns out okay for your daughter.

Tomorrow, Hold your ground with the doctor. Take your husband with you if you need support. Your symptoms are real and they are important. Tell him it is very important to you that you have a diagnosis. Tell him your symptoms, and bring along a POTS brochure from this website if you have to, along with any write-ups from this site. Ask for a consult with a cardiologist, who may know a bit more about POTS than your GP. And, let us know what happens. If you are to fearful of standing your ground or if the doctor ignores your request, you must find a doctor willing to listen. This is your body and your life. Do not let your fear of this doctor's response to your complaints define your life. You can do it. You'll be okay. Be very clear in your own mind WHAT YOU WANT from the visit tomorrow. Write down questions and concerns ahead of time so you won't forget what it is you want from the doctor. If it is a referrel to a cardiologist, get it. Don't leave without getting what you want. Good luck!

It sounds like you did the right thing by having the endocrine tests done. Your doctors must not think there is someone from the endocrine standpoint that needs treating. They may be wrong. They may be right. The search for answers continues. Meanwhile, you do need to increase fluids and be treated for your anxiety or you're going to drive yourself nuts. Are you aware that sometimes doctors cannot find a cause for a person's POTS symptoms? Sometimes they can and it's treatable. Sometimes they can't and some treatments help. Sometimes it takes longer than we like to get this all sorted out. Don't give up. Just make a decision about what you are going to do next. And do it. Best wishes. BTW, I'm getting the impression (maybe I'm wrong) that you are frazzled beyond belief because when you compose your post, there is no punctuation. Are you frazzled? If not, I'm sorry and I don't mean to insult you.

I'm sure you are aware by now that lightheadedness may be because of POTS. The fludrocort is the generic for florinef and helps increase blood volume by helping retain salt and fluids. Your lightheadedness is also increased if you are anxious. So it's a vicious cycle. Maybe the athenolol is not for you and isn't doing anything. Do you have a doctor willing to work with you? Remember, things will change for the better with the right meds. How is your blood pressure when you are feeling lightheaded? P.S. Hit the "Add reply" button so you won't be repeating the prior posting in your answer.

I certainly can relate to this topic. I love it when I'm looking good and my hair looks good, but I despise the entire "salon thing". I hate getting there, being there, tilting backwards, sitting upright , the fumes, the activity level, the music, you name it. I guess when I get around to it, I'll have someone come to my house. Or, I won't cut my hair for a very long time. This part of dysautonomia stinks. It really does. You feel better when you look better. But getting to the salon is a nightmare. Yep, it is.