New Here And Questions

[Michelle F.]

Hi. I'm new here, but I've lurked and learned a lot lately. For the past nearly 2 years, I have been seeing a neurologist who has been "monitoring" me for dysautonomia.....not sure which form he thinks I have.

In March, I was dx'd with a UTI by my pcp. I took a round of Bactrim (sp). In May, I called my neuro and told him my migraines had increased from about 3 in 2 months to 8 in 6 weeks. He wanted me to try Cymbalta for migraines. Before I started it, I wanted to check with my pcp to be sure my UTI was cleared up from March because the literature seemed to indicate kidneys should be healthy. I was still having some symptoms, though not constant. I was rechecked and had multiple kinds of bacteria in my urine, so I took a round of Cipro. After taking that, it must have killed off some of the bacteria because the results came back as only positive for diphtheroid bacterii. Anyone know anything about that one? I am scheduled to see a urologist in three weeks and I am on no meds.

I have known that I have had BP problems about 18 months. But, since my UTI, my BP and pulse rate have been more eratic. I was having more pre-syncope episodes until I finished the round of Cipro. I am not having as many pre-syncope moments, but BP & pulse rate are still not as manageable.

Last week, I had a TTT. I don't know the official dx. What I do know is the cardiologist said I had a "Dysautonomia induced panic attack" and that I need to see a psychiatrist. This was the first time I've see this cardio and she said this after seeing me for maybe 3-4 minutes. I have had a panic attack and I wouldn't call my conscious experience on the table a PA. My pcp gave me the numbers and said that I bottomed out at 70/40 with a 47 heart rate. My bp just wouldn't come up after standing me up, so I passed out after about 6 minutes. The nurse said I was talking when I was unconscious, but she couldn't understand me. I woke up doubled over and stood up wondering where I was, but she said she "If, I hadn't put the table down, you would still be unconscious." I didn't believe her because I sat myself up, but thought she was afraid of getting in trouble (don't know what for). She was nice to me, but obviously a disgrunted nurse who was upset she had to work through lunch and do four more tests. She actually tried to talk me out of doing the test before we started. When we first started, with one arm having a BP cuff and the other with an IV, she had me sign my paperwork. She also asked me medical history questions after the test started with me on the table. Don't think those are proper procedure, but this was my first.

I do know that I need a complete cardiological work-up. My pcp is scheduling me with someone and I hope to hear today about that.

BTW, when I have actually fainted before, I was out cold. This time, I was in some sort of weird really deep, deep dream. I didn't want to be pulled from it and don't know what it was. What does this sound like?

My biggest question is that my pcp wants me to take the beta blocker that the cardiologist prescribed.. One fear is that I may have the side effect of trouble breathing. I don't need help with that. I want the UTI to be gone before I take anything. I am wondering if the UTI is what has upset the balance I had found in functioning. I try to avoid meds and for sure don't want to take the wrong ones.

[masumeh]

firstly, welcom to the forum. I hope you find the support and answers you need here.

Sounds like you are getting some of the same lip from doctors that many of us have experienced (PA instead of fainting from tachy is sooo inexusably commonplace from doctors who aren't really familiar with POTS). I've had POTS for six years, and encountered many, many "doubters" among the medical community in the US and abroad. It's so incredibly annoying to be invalidated like that. I actually had one cardiologist recently blame all my health problems on low wieght, low bp, resulting (as he claimed) from anorexia. I'm not underwieght, don't have low bp, and eat just fine when I'm not nauseated by POTS. Anyway, hang in there! And for sure try to connect with a doctor who is very experienced with POTS. Even panic attacks and anxiety symptoms can be part of the disorder because of throwing the hormones off, especially in hyperadregenic type POTS.

Some meds and also the infections they are prescribed to treat can antagonize POTS symptoms, provoke flare-ups, etc. I recall a forum thread about antibiotics, in which some POTSers said they feel better on them and others said worse. So I guess it depends on your manifestation of the disease. We're all a bit different.

[Ernie]

HI,

You need another specialist to re-interpret your TTT result because this is not a panic attack. You might have been semi conscious at the time they put you down that why you where hearing voices.

[Michelle F.]

Masumah- Thank you. I fainted more on the antibiotic, but I think the infection is what caused my flare-up. Just before the flare-up, I had a great check-up with my neuro with much improvement.

Ernie- Thank you. I hadn't thought of being semi-conscious. hmm. I thought I was deeper than deep, but maybe. The nurse said I hyperventilated. As far as my breathing goes, I just know it was very hard to breathe from the moment they sat the table up. I intentionally focused on remaining as calm as possible and letting my body do it's thing. My lungs were heavy and my breathing shallow, but not panting. When I came to, the table was in the upright position, but I was doubled over. I had the feeling that the nurse was panicked because maybe she wasn't supposed to let me go all the way out. It was like she was trying to brainwash me into believing she layed the table back so that I would come to. I'm just not sure. Wish they would video those things or at least allow an advocate for the patient in the room.

[Ernie]

Hi Michelle,

I had a friend who was declared dead. She had placenta previa and had bleeded to death. A resident had just learned how to resussitate a person and he took her body in the corridor. When she woke up after 3 days in the coma the remembered hearing the doctor saying : Time of death 10:30 a.m. and all the other conversation that followed. She wanted to talk but was too weak. When she was covered with the white sheat she was so panicking because she knew that if she would have no help she would eventually die. She loosed conscienciousness before the resident started to work on her. But when she was declared dead she was still conscious and alive!

[Michelle F.]

Ernie- How awful! Have I read here that some wear medic bracelets. Don't know if that would help much, but I will probably look that up.

Michelle

[Ernie]

Hi Michelle,

Many here wear a bracelet but it would not have helped my friend because it was an emergency situation and it was unexpected. She never got pregnant again because her husband was too afraid that it would happen again.

[ajw4790]

Hi,

Welcome! Are you prone to breathing problems? For the most part I don't think many of us have that reaction to BB's and I don't think that is a common side effect in those not already predisposed to breathing difficulties.

I hope that you find something that helps!

[Michelle F.]

ajw4055 - Thank you. I am going to see about having an asthma test (just to be sure) while I am seeing doctors. Another thing I recall is that the Carbon Dioxide in my labwork was high. hmmm.

Michelle F.