Derek1987

2 hours ago, Alex D. said:

Apple Watch Series 4 has highly reliable HR and ECG, Apple is workin* on BP for a future release.  It’s expensive but it’s the best,  

Any information on when the blood pressure feature will be released? Thanks for the information.

Anybody have a smart watch that detects heart rate and blood pressure accurately? I know they can detect heart rate but blood pressure? If they exist, I'd like to get one.

14 minutes ago, StayAtHomeMom said:

From my knowledge you have a little fluid in your right ear, a "glob" in your left cheek sinus, and everything else is normal. It sounds like you have mild allergies or recently got over a cold. You can have an ENT look at that cheek sinus but most don't worry. I have one in my right cheek sinus that almost takes up that entire space and the ENT I seen wasn't concerned. He was more concerned about my deviated septum. It looks like your brain MRI came back good. Congrats. 

Thanks you for sharing your knowledge!

12 minutes ago, MomtoGiuliana said:

My bp is also variable when I am in a POTS flare up, and typically increases on standing.

Do you ever experience fainting?

I haven't been able to talk to my doctor yet. I requested lab results and had them mailed to me. I'm going to type what the results say and see if you guys can relate. It says

There is no acute intracranial hemorrhage, infarction, mass effect or hydrocephalus. The major vascular flow voids are grossly normal. There is mild fluid in the right mastoid air cells. The left mastoid air cells are clear. There is a small left maxillary sinus retention cyst; the paranasal sinuses are otherwise predominantly clear. The skull marrow signal is normal. The visualized soft tissue, orbits, and globes are normal.

Has anyone had results like this, and was it relevant to your dysautonomia?

Just a couple facts. Every time I stand my heart rate increases by 50 plus BPM usually around 130. Laying down it's in the 70s. Mestinon brings it down 10 to 15 BPM. 

This morning my blood pressure was pretty high upon awakening. 150s over 100. So I took my blood pressure meds. I don't take them everyday because my blood pressure is in good range usually as of late. Not all of the time though. So a couple hours later I take my blood pressure laying down and it's 101/66. So that alarms me a bit because I've fainted or near fainted a few times. So I got up and got some coffee to bring my pressure up a bit. I gulped it down and layed down immediately and my pressure went up to 140s over 70s. 

It seems like when I stand up not only does my heart rate increase, so does my blood pressure. From my little knowledge on POTS, it seems like I'm experiencing the exact opposite of POTS. But at the same time, I know for a fact my pressure has dropped too low from the first time I fainted. I remember in the ambulance the paramedic told me my pressure is coming back up.

I was just curious to what you guys think of this. 

I'm learning spicy food and alcohol help trigger fainting spells for me. I don't drink often so that doesn't bother me. But giving up spicy food hurts. 😟

On 12/21/2018 at 7:30 PM, Pistol said:

I agree with wintersown - get it checked. It may very well just be hemorrhoids but needs to be examined by MD for proper diagnosis. 

Now it's stopped. Lasted about a week and haven't seen any blood since. Shrugs.

Sorry TMI but I've noticed this past week, my toilet paper has blood on it. I go everyday. Sorry again.

So I've only been on it about a month to be fair. It is slowing my heart rate down somewhat. 10 to 15 beats. I'm 31 and feeling like I'm 81 still.

I've already made jokes about myself. I just killed a bug with 2 swats with a fly swatter. I felt out of breath and started getting flushed with forehead sweating with my heart beating really hard. I definitely didn't appreciate my health while I was in a normal condition. You guys who have been dealing with this are some strong people. 

8 hours ago, Pistol said:

@Derek1987 - unfortunately I understand your predicament b/c I went through the same thing. Yes - autonomic specialist usually do not decide if you work or not - that IS the job of a PCP. However - they can recommend to your PCP whether they think you can or cannot work. The actual decision lies with the PCP. Since your PCP already said she would do whatever is needed - she should document it in your chart and give you a written note for your employer that you cannot work until … or ( this is what my PCP did ) you will be unable to work indefinitely. That way there is no date specified and it is implied that it will be possibly a long time. --- Regarding FMLA: have you used up your entire 12 weeks yet? In my case once I used up my FMLA my employer gave me an additional 2 months of personal leave so I could keep my health insurance until I found another insurance ( in my case Medicaid ). Once you use up all of your FMLA your employer does not have to give you your job back. And - if that happens - DO NOT apply for unemployment. That is bad for applying for SSDI. --- Have you considered applying for welfare if you loose your job and have no income from short-term disability? It is so difficult when you go deep into debt due to disability. And I agree with what @StayAtHomeMom said - keep really good track of all your appointments and records, this will all come into play when you run out of FMLA. Although SSDI will get all of your records from the doctors you see anyway. --- PM me if you need help with the job situation and disability insurance - I went through all of that and it was hard, so I know what it is like. Stay strong, keep your head up and know that this not-knowing-what-happens-stage is the worst - but it will end. And keep your faith!!!!

The disability company is trying to get me to go back to work in some capacity even though my specialist documented no work. And she also told me not to drive. My specialist isn't backing up her own statements and wants my primary care doctor to make the call. Okay that's fine so I told my specialist to send over all of my doctor records to my primary care doctor. They should have already been doing that.

Anyways the disability lady asked me if I'd be interested in a part time sit down job if my employer allowed it. I was like I don't know the first time I fainted I was sitting down and I laughed. I told her all of my symptoms. She's gonna get in contact with my primary care doctor today and see what limitations I have. I messaged my primary care doctor and explained everything that's going on. I hope she sees the messages. I'm stressed out. My hands are tingling and I'm seeing stars. But that's normal for me these days. 

I don't wanna go back to work and have any accidents or be back in the hospital and start this whole process over again. I don't even care if I lose my job over this. I still want my disability money if im rightfully entitled to it. I just want the best outcome for my health and finances.  Ahhhhhh!!! Sorry.

So I've been out of work since September. I had 2 fainting spells in one week. One was at work. Being off work started with my primary care doctor. She referred me to a cardiologist. He kept me off work. It's in the doctor records . He referred me to an autonomic dysfunction specialist. I saw her for the first and only time on November 8th. 

I'm on short term disability right now through my job. The autonomic dysfunction specialist told me not to drive. I told her I was concerned with getting back to work asap. She said don't worry about it FMLA  lasts a long time. I sent her a message through the website portal asking when my return to work time frame might be because my boss was curious. She said I can return to work after I see her again in 6 weeks or so and also depending on how I respond to treatment. 

So my short term disability is under review for an extension. My autonomic dysfunction specialist is saying she never put me off work. And that is what they are telling my short term disability company. I even sent the disability company the screenshot of her words of my return to work to work time frame. I did that awhile back actually. The lady on the phone said she's gotta ask my specialist for permission to send that statement. Well I've already done that lol. 

The lady was telling me the specialist doesn't usually put people off of work she let's the primary care doctor do that. I explained to her well my primary care doctor is probably leaning on my specialist because she's the one that specializes in my sickness.

So the disability company probably thinks I'm trying to pull a fast one and be off work. Although they shouldn't since I sent that screenshot. My primary care doctor will keep me off work if she's needed. She said she would do whatever she needed to do for me so I should be okay if my specialist wants to go back on her word. 

My checks are already short. I don't need a gap of missing money because of this ignorance. I'm already struggling and to top it off, I'm still feeling like crap and my body isn't operating normally. Thanks for letting me vent. I'm supposed to get a call back later from the specialists office and see if she's gonna go back on her word or not and if I need to get with my primary care doctor again. 

3 hours ago, bombsh3ll said:

Hi Catlady,

This is absolutely "normal" in dysautonomia and many if not most of us find we no longer tolerate alcohol. It is dehydrating and vasodilating, and can cause orthostatic intolerance and passing out even in healthy people. 

The way I see it is I am not denying myself a wanted treat, I am avoiding something that directly makes me feel even more unwell. For me it is the same with caffeine although some people do tolerate & even benefit from that, but for me it is a strong diuretic. 

It doesn't affect my social life personally as I am housebound, but good friends should understand and not put pressure on you to drink. 

B x

Hmmm interesting. The very first time I fainted I drank alcohol. It wasn't much but I rarely drank anyways. I haven't drank any since because the situation was traumatic to me.

Then I've had 2 near fainting episodes after consuming spicy food. I can't handle much caffeine anymore because it makes  me feel sick. There's gotta be a connection between all of these things. I just want an official diagnosis because I want to know if I can work or not. I'm just worried about my future.

OP, don't be pressured into anything. If they are true friends, they will understand.

13 hours ago, jklass44 said:

Hi all.

For a number of years I've been woken in the middle of sleep from night sweats, chest pains, palpitations, and/or having to urinate ASAP... I was exposed to someone with TB a while back and was tested for that, but it came back negative. However, most recently in the last year, I've been woken by coughing fits, choking and gagging episodes. It's extremely unsettling and will sometimes result in me throwing up.

Anyone that suffers from GERD or sleep apnea, do you think maybe this is something I should consider as a possibility? Or are these just flares (I have hyperPOTS) that seem to be getting worse? 

Thanks in advance for any input!

Definitely go get a sleep apnea test done. I've been so tired for years. My wife would get mad at me a lot for always being exhausted. Not wanting to do much after work or do anything on the weekends. I didn't test positive for sleep apnea but we discovered my heart beats extremely fast upon standing which is causing my exhaustion. I stood and walked all day long. I've talked to a couple people with sleep apnea and after getting the machine to sleep at night, they feel a whole lot better. At least get the test done to rule it out.

1 hour ago, WinterSown said:

POTS isn't the only dysautonomia, there are many of them. My EP , with a wink in his eye and big smile, calls it my NeuroCardioVasuVagally thing. Once in a while my numbers do POTS-like jumps, but generally not. I I get Drop Attacks--fainting and remaining conscious for the reset. Arrrgh. 

Over the next few weeks and months your doctors are going to tweak your diagnosis along with your drugs to find the best management that works for you. We are all so very unique that there really is no one-size-fits-all drug or treatment. We don't use drugs to raise my BP, instead he ever-so-slowly took away drugs that were lowering it too much. I saw him a  few weeks back and it's the first time in over a year he didn't tweak my drugs--not many left because I do exercise and eat right which is a huge part of management. I certainly understand your frustration but it can be a bit of a bumpy road for a while until you get your meds and management worked out. During this time be kind to yourself and acknowledge that it's trial and error and you are on the way to being the best you can be. 

 

"I get Drop Attacks--fainting and remaining conscious for the reset. Arrrgh. "

What do you mean remaining conscious for the reset? The first and worst time i fainted I was fully aware of where I was.vision loss, hearing loss, and paralyzed .I couldn't even put myself on the stretcher when the paramedics got there but I was coming out of it. When I was put back in the ambulance, the paramedic said my blood pressure is coming back up. On a side note, my wife told me the paramedics were all smiles and not worried and I was thinking I was dying. Worst experience in life.

I'm not sure if I'll be on SSDI with my current conditions or not. But my wife was approved for SSDI this November. She has ankalosking spondylitis, fibromyalgia, arthritis, had to have hip replacements and other problems. My question is, can benefits increase or decrease by the state or city you live in? Or will it be the same no matter where you live? 

I wasn't sure if I should have posted this in here or not but it kind of relates because I might be next. 

9 hours ago, MomtoGiuliana said:

Yes good point.  I was tested for this too, years ago.  It is pretty rare, much rarer than POTS, but should be ruled out.

I thought I was onto something. Rookie mistake but hey maybe my post will help someone.

4 hours ago, StayAtHomeMom said:

Most POTS patients should have had it ruled out before their POTS diagnosis. They did the urine catacholmine test on me. It was normal I had really hoped that was what my problem was. 

Don't feel bad I have multiple issues and my short checks are having bill collectors call me all day now lol. Waiting on another short term disability extension approval. The Lord will see me through. Been a tough road!

I'm so new to this I don't know what mast cell is. but when I was taken to the hospital from work from near fainting, I was so distressed because I was fighting the fainting. I begged for anxiety meds. They gave me Ativan 1mg through the IV. It stopped the fainting and I actually fell asleep for a few minutes. My heart rate was 156. My blood pressure was like 160s over 110s I think.

I've been taking benadryl for like 5 years to go to sleep . I was exhausted and still needed it to sleep. Now I'm finding out about this adrenaline over production stuff so I guess that's why I needed the benadryl. But since my last trip to the hospital, taking benadryl makes me super sick. Can't explain it. But I have Xanax now thank God. Sorry I don't have an answer for you but just trying to figure things out together. This is new territory for me.

So I went to my psychiatrist yesterday. I told him what was going on with me. One of the things my autonomic dysfunction specialist told me was my adrenaline was going non stop. I told my psychiatrist about this. He said one of his ex patients had this problem and suggested he get an ultrasound on his adrenal glands to see if there are any tumors on the glands causing the body to pump out too much adrenaline. The psychiatrist was right. His patient had surgery to remove the tumor and he was back to normal. He told me to go check this out asap. So I made a drs appointment already. 

He explained to me I could still have damage from the Rocky mountain virus but the adrenaline is something completely different. The damage would take away a function from my body, not help produce more adrenaline. I figured I would share this information so you could look into it and at least rule something else out .

2 hours ago, Pistol said:

@Derek1987 - hot foods cause vasodilation, hence the sweating and flushing. This happens even in "normal" people. I would avoid spicy foods for now. 

Ouch. Thanks for the reply. I'll add this to the list of things to tell my doctor.

The 2nd time I was going into fainting but never fully went out, I had taken a cayenne pepper pill for the first time to reduce blood pressure. Now that I've been checking my blood pressure a lot, my pressure is never consistent. I'm not sure how long that's been going on.

So tonight, I ate like 15 pepperoncini peppers. They aren't too hot. I love spicy food. About 20 minutes later, I felt it coming on as if I was about to faint. This is while I'm laying in bed. I got hot fast so I turned on my box fan and pointed it towards me and layed down. My face was flushed and hot to the touch. My heart was beating really hard. Although that could of been because I was freaking out. Fainting scares me because I feel like I'm fighting for my life.

I layed flat for a few mins and tried to relax. Of course my wife was worried and trying to calm me down and seeing if I needed to go to the hospital. I said no let me just try and relax. I seem okay now. I was wondering if spicy food can trigger this? 

On 12/9/2018 at 6:20 AM, Pistol said:

@Derek1987 - do you have swelling or color/temperature change in the right calf, the one that burns?

I don't think so. It's still sore though. Tomorrow I'll take a closer look. 

30 minutes ago, WinterSown said:

I get this burning at PT after I've been on the hardest balance board for several minutes. The PT doctor told me to get on the bike and pedal as fast as I can without resistance--it works like a charm to get circulation back into my legs which takes away the pain. We've now added this fast biking as my last step in the PT workout--it's great.

 

I don't suffer any pain other than the normal wear and tear I've done to myself. I don't need pain meds or anything. I'm just getting the burning sensation as if I'm in the middle of exercising but I'm not doing anything. I can feel it in my thighs right now. 

You have pots? And pain is another symptom of it? I'm glad I have this forum to go to for knowledge. Doctors only spend so much time with you.

3 minutes ago, potsiebarbie said:

I think I might have something slightly similar. My muscles constantly feel like I've "overworked"  (for lack of a better term) them. They get sore and tender to the touch. Sometimes the legs but not always. Sometimes it's back, or abdomen, or intercostals, etc... Idk if I'm using or hurting them and then just totally forget because of my ridiculous brain fog or what. Lol Do yours feel like they would during a workout or like the aftermath of a workout? 

They burn as if I'm currently working out. It's like if you were doing push-ups and it starts getting harder and your arms start burning. Or doing crunches and the more you do, the more it burns. I can still feel it now. Not as intense. 

I get this randomly. BUT...my right calf muscle feels sore like post workout. Like a muscle that hasn't been worked in awhile. It's always my right calf. This started maybe 3 months ago. It'll be sore for a couple days then go away. Then randomly come back. Idk what the heck is going on.