StayAtHomeMom

I seen in a basic lookup that there are 4 different types of drugs that can be used for your conditions. Have they tried you on anything else besides the beta blockers?

I did a little digging and I see where that would cause an issue. Kind of surprising that some people would need to restrict their fluids. Most doctors and health advocates always seem to push hydration. I guess we all learn something new everyday.

Personally I would push for dysautonomia testing. At the very least it would rule it out. Seems like you are in the UK and I have noticed a lot of people say it takes forever to get in. So be prepared. Curious, have you had an echocardiogram done on your heart? So that they could check the structure. My PCP told me she had another patient with POTS and she had a structural abnormality that caused it. Turns out they didn't find it in her heart but found it in her son's when he developed POTS. It is only hereditary so she had to have had it. I find it interesting how body structural issues can cause seemingly unrelated issues. Good luck with finding your answers and I hope it doesn't take too long.

I would get the testing done from your doctor. It is much cheaper. Even if insurance doesn't cover it most of the time hospitals and doctors offices has deals with labs or their own labs. The allergy testing I had done was done by a nurse with a scratch test and the needle testing. I special requested the needle testing because I have seen the scratch testing not be really accurate all the time. Celiac is a regular blood test. Good luck. I hope you find what you are looking for.

That sounds similar to me. I spent a year with multiple doctors telling me it was anxiety and my smoking. Til I did a poor man's tilt table test every day for a month and brought them the data. The data along with a few good doctors I found my diagnosis. But I did my research myself. Has your blood sugar ever been checked? My mom and brother have type 2 diabetes and night time trips to the bathroom was one of their first signs. If you are worried about the low blood volume I would try an electrolyte replenishing drink. Here in the US I would recommend Gatorade, POWERade, vitamin water, or pedialite. Not sure what options you have it the UK. It never hurts to hydrate. I am not sure about how your oedema and mild heart failure would effect your body. I would try to stick to what the doctors say. Maybe try calling to get into a canceled appointment slot.

My family will never believe I am saying this but it is usually not good to look things up. I would go see a doctor. Maybe see if compression stockings could be helpful in your situation. They are supposed the keep your blood from pooling in your legs. Be safe and good luck.

Are you about a week out from your cycle? I am sorry if I incorrectly assume you are female. I notice I get flares the week leading up. I am sorry things are going rough. Remember it does get better and doesn't last forever. I have thought about trying a university setting but my local university has always been a joke for me. Which is funny because they are one of the top in the country. If you end up doing it I would like to know how it goes. Try upping your electrolytes. When I feel extremely bad I drink the vitamin water Revive. It has extra potassium in it. It is fruit punch flavored. It is a little sweet but it seems to help. I wish you luck in the coming days and hopefully your flare will ease soon.

What kind of test was this? I have never seen it. It would be interesting to check out.

I would definitely get a second opinion. I don't remember all of the ranges for thyroid stuff but the high side of tsh is 5. If I remember right a lot of doctors don't find that concerning until 10. But considering her symptoms they should be willing to try to treat her. Symptoms plus tests should be enough to treat. Good luck.

Everyone has trouble with the acceptance. I found the best thing to help me accept it is not to compare myself to before I got "sick". I compare myself to last week or last month. Sometimes last year (it has been 3 years and counting). I have issues with drinking enough water as well. I have found that certain bottled waters taste better than others. (Ice mountain is my favorite) occasionally I will drink a fruit punch vitamin water if I need the extra electrolytes. I have never been a physically fit person. Too uncoordinated for sports growing up. I mostly walk as my exercise. And my job helps me to move around in short spurts. I hope you can learn to accept your condition. I know it is hard but your life does get better. Having POTS is not the end of the world, but it is definitely a shift in the world. Listen to your body, accept your limitations, and hear what the doctors are telling you. Good luck!

If the doctor won't treat her hashi's see if another will. There has been a correlation between autoimmune issues and autonomic dysfunction. My sister in law had nodules (biopsies inconclusive), cold defects, but fine blood work. Took her 3 doctors before one would remove half her thyroid. That was over five years ago. She just had to have a biopsy again recently. When I get a chance I am gonna research the blood tests she needs to prove hashi's. I think she may have it. But doctors always say her thyroid is fine.

Congrats on a good visit. I hope this medicine works for you. I know find the right combo can be tricky. Good luck!

My PCP recommended I try a "university setting" to rule out autoimmune and EDS as my underlying. Cleveland Clinic was one of them recommended. How was your experience with them? It would take me quite a few hours to drive to them and wondering if you found it worth it.

I don't get many headaches anymore but when I do they are rough. It seems like most medication doesn't touch it. I usually have to take motrin or excedrin migraine and go to sleep. I have never noticed a trigger. I just kind of deal with them. My oldest son (who I suspect has POTS as well) has almost daily headaches. He hates to take medication. He only takes it when it is awful and then lays down. He says the medication makes it less but never seems to get rid of them completely. This is going on 3 years now. ENT and allergist says it isn't his sinuses. And his headaches change location or are all over. Not sure why he has them. He just shrugs them off now and says I am used to it. Definitely a tough kid.

I would call the doctor and ask. I think having your answer then waiting for your followup would be easier on you. I hope you don't have to wait too much longer. I remember waiting for the validation and it felt like 100 years. Good luck!!

I definitely agree. And when new ones show up it is always concerning.

I would try the neurologist. Could be a form of renauld's (sorry I may have misspelled that). Second maybe cardiologist due to maybe circulation issues. Sounds more like a nuisance than a problem. Hope it stays that way for you.

I meant just non hyperPOTS. I have yet to find my underlying cause. So in my mind it is just "normal" POTS because there is nothing attached to the acronym.

Sorry, I haven't. The closest thing is my oldest son experiences almost daily headaches. Always different areas of his head. Allergist and ENT have ruled out his sinuses and it seems like allergy meds were making it worse. He mostly deals with them without pain medication. He says you get used to it. He has the classic sign of POTS where his heart rate jumps over 40 bpm. I haven't got his official diagnosis yet because I had brought him to a pediatric cardiologist and she was useless so I have been waiting it out hoping he will outgrow it without his symptoms getting worse. Have you gotten a second opinion from another neurologist? Neurologists are the only doctors I know of that could help track down the reason for the migraines.

My first was propranolol. I have breathing trouble as my main and consistent symptom and it made it worse so my cardiologist tried a calcium channel blocker. It helped but not enough. My pulmonologist recommended the metoprolol because of the type of beta blocker it is, it would not effect my breathing. That was about a year ago. It started messing with my sleep about 3 or 4 months ago. It helps my tachycardia and my palpitations but my sleeping just sucks. I think I have just normal POTS and that may be why to midodrine helps me but it helps me have energy and feel more "normal". I think I am going to have to make an appointment with my specialist again to mess with my meds. My cardiologist moved and my new one is not as good. She just pushed me off to my specialist to be my main doctor to take care of me even though he is 3 hours away. My life is just so busy right now that I don't have the time and energy to go see him.

I sounds like you are doing what you can. Personally I don't like Gatorade but I will occasionally use the vitamin water Revive fruit punch. It doesn't work right away but I usually feel better the next day. Sleeping on a schedule seems to help as well. I usually give myself 12 hours and go to bed and get up around the same time. I have noticed the crappier my sleep my symptoms flare more. Sometimes it is just time. Most of my symptoms cycle so I just have to wait them out. This past week has been bad insomnia which is starting to make my body mad. It will pass in a few weeks, I just have to wait and things will get better. Good luck and I hope you have more good days.

I am currently trying the ER. I am not thrilled with it but it is only because I have having trouble sleeping (that is why I was only taking the 12 hour one in the morning but not evening) I think personally it may be time to try something else for me. I felt like my second TTT may not show my POTS because I was feeling better. But according to my doctor and the technician who did it they said that it showed POTS. My blood pressure dropped a bit and they made me wait to get off of it but it definitely wasn't as bad as my first one. I think as long as a properly trained professional are reading the results it will be fine. Be careful with lightheadedness, that can be dangerous if you are not careful. Call your doctor or pharmacist and share your concerns. They may help alleviate some of your fears. Right now I am feeling pretty crummy but my heart rate is only 80 sitting. I take the metoperlol to help my tachycardia so that may be part of it but I frequently have symptoms with my heart rate and blood pressure being normal. It is just one of those things. Hope you keep having those good days.

Best thing I have learned is to only compare yourself to last week. Not from before you got sick. I am better than I was last year even though right now my breathing is being stupid. I have also learned to listen to my body and not overdo it but push at the same time. I bought a Garmin HR (it is like a fitbit but waterproof) and can monitor my heart rate to see when to push through symptoms and when to lay down. I also over load on salt and hydrate as much as possible. It also helps to take a shower at night because it is exhausting and helps me sleep. Good luck and I hope you find your answers. I know how frustrating it can be.

Do you still live in the same place? I wonder if you might have a mold allergy and mold. I know some people can be sensitive to mold and it can cause migraines, until they get out into fresh air for a bit.

If I remember right my research said the increase was normal for POTS. I have noticed mine increases when I eat heavy foods so I try to stay away from them. Do you take meds to help lower yours?