McBlonde

Well, Vandy's is good for dx only.. Their follow up *****. Every patient is different. I do not do well in the mountains or in a dry climate. I liked the climate in Hawaii when I was there. Tropical winds always blowing keeps it nice, not hot like Florida. I felt 100% better in that climate, but like I say, everybody is different. What about trying to call the doctor there and see if you can talk to him before you make your decision?

For the doctors like Dr. Rowe that use saline IVs as part of their protocol for a subset of patients..... Does anyone know how much and how often?

I would love Hawaii. I personally do better in the winds and salt air of the sea. I have no idea why. I did great in the Florida Keys even those it has high humidity. It was if it was easier to breath. I do better with the weather more or less constant than with change of seasons.

One question... Is there a POTS doctor in Hawaii?

Isn't that weird! Mine is nausea instead of dizziness. I was up until 7:00 am and woke up at 3:00pm ..... I hate this!

My nights and days are mixed up just like a baby's... If somebody wakes me instead of just waking up naturally, then I feel very nauseated. Am I the only one with the mixed clock and morning nausea?

I don't have one for symptoms, I do have one on my IPhone that measure my HR which is pretty awesome.

So glad you posted this topic. I had a mammogram and passed out while standing there (LOL) was taken to the ER where they hooked me to up an IV and I felt like my old self within an hour. It must be what a drug addict feels like when they get there fix! I would give anything to have it again.

Does anybody know the medical protocol when admitted for IV infusion for POTS? I would love to know. I'd be willing to get a port.... Maybe Home Health could do the infusion? I've tried everything and yet I'm worse. I'm at the end of my rope on knowing what to do!

Yes! I had the same thing happen to me! Cardiologist put me on Bystolic. The first month it was amazing because my HR went from the 130s down to the 80s, but after a month on Bystolic, I felt no motivation, apathy, sort of like I just wanted to curl up and go away. It was not the same as depression, but it was crazy bad. My PCP took me off of the beta blocker and that feeling went away. Unfortunately, the palpitations are back and BAD.

I am so glad you asked that question. I would love to know the answer! I loved books. I loved reading. Now I can't read a book. It's so frustrating on top of everything else. If I could read, it would at least be something left that I enjoyed doing!

Thanks for the replies! I am really baffled. My BP has always run very low, as in 80/60, 78/54, etc. I was started on Florinef years ago with the hope of getting the top number up to 110, which never happened.

The only thing that has changed lately is my cardiologist had me had 1/2 Florinef at night and 5 mg of Bystolic.

I had "spell" yesterday that I assumed was sitting up too long and my BP dropping (it felt like orthostatic hyptention) so I was SHOCKED my BP was taken and it was high! I don't recall my BP ever being over 120 ever!

I didn't take Florinef last night and I just knew everything would be back to "normal" today, but when I woke up and took it, it was 141/83 82 HR before any meds.

The Bystolic sure has gotten my heart rate down, but doesn't it usually cause your BP to be lower also?

Thanks so much for any input!!

I've always had low blood pressure (like in the low 90s over 50s range). For the past 2 months I have been taking 5 mg Bystolic for my POTS. Well, today I felt nauseated and started getting a headache. I assumed my BP had dropped causing the symptoms. I took it and my BP was 150/103 with a HR of 64. In the past it's barely ever been over 100 systolically, so I don't know what's going on!

I've taken it every 15 minutes:

5:30 132/80 59

5:45 124/83 57

6:00 135/81 66

6:15 122/77 64

6:30 150/103 64

6:45 140/76 63

7:00 114/82 67

7:15 133/82 63

Any ideas of what could change such a drastic change in my BP?

Thanks for the suggestion. There are nursing jobs that are less stressful so that has possibility eventually. Masters, I've considered, I have such horrible memory problems though I'm not sure I could pull it off. I have a hard time even reading a book without having to read some of the sentences over because I forgot what I've read. I also have a hard time remembering to take my own meds, it would be kind of scary to be responsible for someone elses. I'm hoping for some improvement and if/when that happens there are a lot of possibilities!!

Thanks!

Brye

Same thing here! What is it about POTS that affects reading? I used to read 3 or 4 books a day and now I can't read a page! I would love to know what specifically causes the reading disability, if you know!

Those are some great ideas, Syd. I'm at a point where I can barely get my thoughts together enough to write a post, much less do a website, but I would be glad to contribute to keep it going. The site has been so helpful to me and so many others.

So, is the idea to look for a paid webmaster?

Happy Holidays Everyone!

I am hoping someone can help me on this. I have been trying to reach Dr. Thompson's office to make an appointment for a while now. Everytime I call, I get the voicemail. It says "leave a message if you want to make an appointment" and I do, but no one has never called me back.

I really need to see him to get some help with sitting up. I just found out yesterday that my dad has lymphoma and I am desperate to get this at least under enough control so that I can sit in a chair.

Anybody have any info on Dr. Thompson's office as a new patient?

Thanks so much!

On the bright side, I can watch movies over and over again, 'cause I can't remember how they end, lol!

Seriously, I really knew I was in trouble when I was driving home for work and suddenly couldn't remember how to get home! Scary!! After several months, I finally figured out that my BP was dropping low and my heart rate was rising high when I was sitting down in a chair or as it turned out, the seat of a car.

Maybe your not getting enough blood to your brain....

Exactly, Nowwhat! And.... the important thing is that the date you apply is the date that they will pay you back to if you have to go through an appeals process. For instance, if I had applied in March of 2003 and had been denied and appealed and denied and appealed and then approved in November 2005, SSDI would back pay you all the way to March 2003.

I was in hospital administration just getting to the top of the career ladder when I got sick in 2000. Looking back, I know that I had symptoms prior to being knocked completely to not being able to get out of bed in 2001. Gradually, after moving to South Florida, I got better (at least not confined to bed. Being the Type A that I was, I thought I could just push through this and that if I could just go back to work, even at a lower level, I would (somehow) regain "myself".

That was the biggest mistake I made, both for my health and financially. I used every once of strength I had to work trying various much lower paid jobs at doctor's offices, recruiting, etc. It got to the point where I was so sick in the AM that I couldn't make it in before, 9:00, then 10:00, then 11:00. I stayed late and did my work, but I was nowhere near the A level I was in graduate school or as a hospital executive. Thankfully, the doctors I worked for helped me realize that I didn't need to be working. It was making me sicker and sicker. I applied for SSDI in February and was approved 5 weeks later. (Shock!)

The thing is, you are penalized for trying to work part time or at lower level jobs. To figure you benefit, they look at your last 10 years of employment and average those to figure your benefit due. I should have applied when I was bedridden in 2001. That was the top years of my earning power and my benefit would have been the max you can draw. Instead, what I did to myself by trying (and failing) to work was to lower my average salary earned. It made a difference of $500 less a month.

Even if I hadn't been approved at first in 2001, I could have appealed and continued to try to work failing at it.

My problem was that I looked at it as giving up. I shouldn't have done that because you can always try going back to work while drawing disability and see how it works out.

I hope this will help someone else. I am thinking especially of the long time nurses who can't work now and are struggling to work.

Yikes! 52/48?! Were you still lying down? Did they take you in for IVs? Have you been tested for hypovolemia? Were you dehydrated at the time, or do your systolic and diastolic always stay that close together (pulse pressure narrow) even after you hit the floor and are supine for a few minutes?

Yep, I was standing there in the gym doing nothing but talking to the trainer. I told him I was feeling a little dizzy and they laid me down on the floor and propped my legs up. They freaked out when they couldn't get a BP and called 911. While waiting, they were pouring bottles of H2O down me. Then, the EMTs got there and I heard one shout to the other "I can't get a blood pressure." LOL, I was lying there thinking, that doesn't sound good! The paramedics arrived shortly and they got one at 52/48. When they got me in the ambulance, I remember the paramedic saying this is going to hurt and wow, was he right. He inserted a 16 gauge needle to get the fluids going wide open. They kept me in the ER for 2 hours with fluids running. They discharged me when my BP was 78/60. The discharge note said my dx was an anxiety attack. Crazy!

That was back in 2001....I just looked at my physician's follow up records and my BPS ran 78/58, 90/50, 90/62, 90/56, and 88/52. These were all sitting down. What does it mean when you have a pulse presure that's narrow?

Yikes! 52/48?! Were you still lying down? Did they take you in for IVs? Have you been tested for hypovolemia? Were you dehydrated at the time, or do your systolic and diastolic always stay that close together (pulse pressure narrow) even after you hit the floor and are supine for a few minutes?

Yep, I was standing there in the gym doing nothing but talking to the trainer. I told him I was feeling a little dizzy and they laid me down on the floor and propped my legs up. They freaked out when they couldn't get a BP and called 911. While waiting, they were pouring bottles of H2O down me. Then, the EMTs got there and I heard one shout to the other "I can't get a blood pressure." LOL, I was lying there thinking, that doesn't sound good! The paramedics arrived shortly and they got one at 52/48. When they got me in the ambulance, I remember the paramedic saying this is going to hurt and wow, was he right. He inserted a 16 gauge needle to get the fluids going wide open. They kept me in the ER for 2 hours with fluids running. They discharged me when my BP was 78/60. The discharge note said my dx was an anxiety attack. Crazy!

That was back in 2001....I just looked at my physician's follow up records and my BPS ran 78/58, 90/50, 90/62, 90/56, and 88/52. These were all sitting down. What does it mean when you have a pulse presure that's narrow?

If it's an electronic machine that is reading "Error" it may not actually mean that your BP is too low to measure, but that your pulse pressure is too narrow. Many of the machines will throw an error reading if the systolic and the diastolic BP are too close together. This happens not infrequently to patients with certain types of dysautonomia when they are upright. (I've nearly tossed my machine through a window for this reason.) If you call the company that makes your machine, they can usually tell you the lower limit of blood pressures it is guaranteed to be accurate down to; I was surprised to find that my machine was capable of taking extremely low readings (which left me with the conclusion that my "errors" were due to my unusually narrow pulse pressures).

Thanks! I didn't know that. It also happens with the one in the doctor's office that they use. Once when I fell out at the gym, the EMTs couldn't get a BP, but when the parametics got there, it they were able to get it at 52/48 (which was at least 5 minutes after I first went down.

I am totally confused on this point regarding BP and HR. My heart rate shoots up sky high, but my BP drops to non-measurable within the first 3 minutes of standing. For instance, the last time I took a shower, I started getting a bad headache and nausea. I got out, measured my HR which was 168 and my BP had dropped too low to measure. That means, my HR is shooting up more than 50 points AND my BP is dropping at least 50 points.

Does that mean I have POTS with orthostatic hypotention or orthostatic hypotention with compensary HR increase?

Firewatcher-

What you describe happening when you exercise, is exactly what happens to me at rest. Then, I start to exercise, and my CO2 expiration normalizes.

We are going to start the search for a pulmonologist with an interest in metabolic issues, as suggested by the cardiologist. I'll let everyone know if he/ she can make heads or tails of the results or explain how this is related to dysautonomia. I read Stewart's article on hypocapnia, but I don't think hypocapnia necessarily equals high respiratory quotient. Stewart measured PetCO2 as a measure of hypocapnia. My PetCO2 was normal, but my respiratory quotient was high from increased CO2 expiration. I am out of my league in this area, as is the POTS cardiologist I see, so I need more clarification.

Sue and McBlonde,

I know we share many of the same symptoms, so I am curious if we have the same root issue.

I was 3 years old the first time I fainted, so I am thinking it was something I was born with that causes the messages to not be sent correctly, so much so, that the messed up messages eventually involved my pituitary, my adrenal gland and my kidneys.

I was reading (is it Dr. Rowe?)at Johns Hopkins treatment plans last night and he stated that some patients get help with IV therapy once a week.

Do you have to have a port put in for that? I was thinking if I could get the IV therapy it might give me the boast I need to get over the "hump" of the latest severe flare.

I don't really understand all this, but I did want to chime in and say that I, too, have low aldosterone and low renin and I just caught myself holding my breath when I was walking. I didn't even realize I was doing it. Weird.

So, with all these issues - what do you do for them? Is florneff and salt your only solutions? Do you also use DHEA or pregnonolone? I asked my husband last week about going to him. He said we could. He works in LA some of the time, so it wouldn't be hard to get there. He must be taking insurance now, because he came up as a provider for my insurance. First, I think I'll continue with the neuro visit I have scheduled and if that doesn't give me the answers I need - then he will be next

Sorry, I left that part out!

For my pituitary failure: estradiol, progesterone, testosterone, and thyroid meds.

For my adrenal failure: DHEA and Florinef with Thermotabs.

Plus I took Klonopin and 25 mg of Trazadone for restorative sleep.

That regimen kept me upright from 2003 until August of 2009. For reasons unknown to me, last August I started having headaches and nausea that appeared to be orthostatic in nature. I don't know if my symptoms are from my HR rising (last time I was in the shower when I got out my HR was 168), but when I got downstairs and took my BP, it wouldn't register it had dropped so far. Chicken or the egg??

Either way, neither is "normal".

Hope this helps.