Derek1987

24 minutes ago, DizzyPopcorn said:

Thats just frickin crazy. How the h*** do you cope? Do beta blockers do nothing for you? 

Not that ive noticed. They just added mestinon to the mix. Ive been on mestinon by itself and did nothing for the adrenaline. So now they are trying the combination of mestinon and coreg. They said the beta blocker isnt doing enough and are adding the mestinon to help my body " put on the brakes".

I dont live a normal life anymore. The best place for me to be is in bed and the lights out and in the cold. I had some visitors come over the other day for maybe an hour and a half. I sat up maybe 20 mins and layed on the couch the rest of the time. I was battling fight or flight during the visit but tried to be normal. All the noise of conversation, and trying to focus on conversation myself, it really took a toll. After they left, a tidal wave of fatigue hit me and i couldnt stay awake. Slept for about 3 hours and woke up feeling like crap. Lol.

On 9/8/2019 at 9:41 AM, KaciCrochets said:

Hi, I'm new here but not new to POTS. I'm hyperadrenergic but for the past few years my symptoms have been tolerable. However, the past three weeks have suddenly been brutal, for no reason I can ascertain. I've had norepinephrine surges all night for weeks, and after the first week I developed searing stomach pain to go with them. I've done the typical GERD protocol, and my new PCP put me on a low dose of hydroxyzine and that helps the burning go away, but does not stop the rushes. It keeps the rushes from becoming panic, but it's still tough to sleep. I had been doing well after starting the med a week ago, but yesterday I went from feeling fine to suddenly having stomach pain and nausea, and fighting panic. It was up and down the rest of the day, and nighttime was awful. I am having slow gut motility with it. It's hard not to let the anxiety spiral because five years ago I had a large kidney stone and that's when I became stuck in fight or flight. The ER gave me lorazepam, which I took for five weeks while I went through two surgeries, and then tapered off for three months, but I was stuck in hyperadrenergic h*** for two years before I healed enough to be able to sleep longer than four hours. So being back in this state for no apparent reason is terrifying. I'm 46 so I am wondering if hormones are becoming a factor. My doctor has referred me to neurology (I switched insurance so I can't see my dysautonomia specialist anymore), but given past experiences I am not very hopeful I will get help.  I guess I am just looking for reassurance that I am not alone in my struggles. Thanks for reading.

I suffer through some sort of panic every single day. Sometimes its so bad i have to take my max dose of xanax and ask to be left alone in our bedroom and sleep it off. I just made my wife some soup from a can. When i got it out of the microwave, my hands were shaking so bad, i spilled 20 percent of it on the oven. Face palm. I deal with fight or flight daily so i understand. Its torture.

1 hour ago, whoami said:

Thing is, im not even diagnosed with POTS yet, but i suspect i do have it. So i still dont know if what i had was a faint spell or just a classic panic attack.

I left the ER 20 minutes ago because im feeling ok now and the doctor will probably just say its anxiety without giving me any test. So instead of wasting my time waiting for another 10+ Hours potentially catching something there ill just head back home and take more clonazepam as needed. Its just that this "whatever attack" took me by surprise and i seriously thought i was going to die. But yeah whatever that was, it was seriously scary.

 

My first neurologist said i was having fainting issues due to anxiety. Wrongggg. Have you ever done a poor mans tilt table test? Something you can do at home with a blood pressure monitor?

2 hours ago, whoami said:

Im at the ER after an ambulance trip. Went for a walk and when i came back home, i was out of breath, dizzy, heart pouding, etc. I couldnt calm down even laying, i was shaking, had a headache, my limbs were tingling. I honestly thought that i was done for and on my way to die. Well, guess it was just a panic attack. I feel wired atm and so tired its crazy. Im still undiagnosed.

 

 

Yay for another 20 hours of waiting time because apparently its not critical and my heart rate is only 90 and my oxygen is fine. But i need a few things to get checked so i will have to wait.

 

Sorry, had to vent.

 

How are you guys doing?

Sounds like a faint spell. My arms and hands tingle every time ive had a faint or near faint spell. It scares me so much. But theres so many people that go through it with this disease. The body is just trying to get blood and oxygen to your brain. Its still scary so i know how you feel.

So since being stuck in bed officially a year now, i have finally gotten motivated to eat healthier by restricting my calorie and sugar and carbs intake. Nothing extreme but i know i need to change my eating habits because ive gained 35-40 pounds! 

So im cutting back and watching numbers. With that being said, i dont want to miss out on any nutrients. Do you guys have any multivitamin suggestions? Looking for the gummy kind please. Thanks for any suggestions.

1 hour ago, Goodr189 said:

Interesting that you describe "stomach shocks". I recently been having similar feelings and they don't have any effect on my heart rate either. They sometimes give me anxiety or cause shortness of breath until I can sit down. Could you describe them more?

What other meds do you take?

Sometimes i just have a weird feeling in my gut. Other times its like a jump scare feeling from watching a scary movie but 2 or 3 times worse and is set off by nothing(actually its set off by too much stimulation) and the feeling goes from my heart to my stomach. Its taken me to the floor before. Its like getting punched in the stomach or something. I cant put it into words but yes it causes extreme anxiety and usually my heart rate will go up. This time my heart rate is the slowest ive ever seen it. 

I take coreg 6.25mg, xanax, midodrine, and they also want me on mestinon but they didnt call it in on my last appointment. Ive been on it before and it did indeed slow my heart rate but i wasnt on coreg. Coreg has definitely helped slow my heart rate down. I dont really want to add mestinon into the mix especially since my heart rate is already decent when laying down. I cant stand for long or those adrenaline attacks get me or chronic fatigue where i cant hold my eyes open.

I know their goal is to get me on my feet and operating like a normal person but its not working out so far. Eventually im going to vanderbilt. No appointment date yet. Waiting on that.

Ive been helping my step daughter with school work for a few hours. Shes doing home school this year through a private school. She tests on campus. I got that shock feeling in my stomach thats lead to my body trying to faint in the past. I was laying in bed helping her. My wife was well. And i guess after all the talking, focusing, bright light in room, my body couldnt take it anymore.

I took a midodrine and left the room to be in quiet. My pupils were very dialted. I had a couple more "shocks" to the stomach. My BP is normal but my heart rate is in the 50s. How can i have adrenaline overload with a slow heart rate? I dont ever have a heart rate in the 50s. Especially the low 50s. 

Thoughts?

Edit: something else i noticed. When my adrenaline is in overload, any medicine i take seems to be more potent.  If i take xanax during huge adrenaline flare, its faster and more potent. It only took like 15 mins before i felt the crawling skin on my scalp with the midodrine. Very fast.

23 hours ago, Scout said:

I'm really struggling with how much my family and some friends just refuse to acknowledge that I'm sick.

Even after hearing doctors saying I'm unwell or that I meet the criteria for diagnosis, many people in my life still always say things like "a positive attitude will fix it". 

I do believe in being as positive as possible, but it's frankly really hurting me how much they won't listen when I tell them I can't do something. They think saying "can't" is a weakness, but in reality for many of us with dysautonomia, it's about accepting reality and not making myself ourselves even more unwell. 

I tried to have a discussion with my mother about how I'm going to buy a wheelchair soon, and her response was the typical "you don't need one and stop having a victim mentality".

I just don't know what to do anymore.

It feels like I'm hitting my head against a brick wall, trying to get them to see. Sure — I realise it's hard for people to sometimes understand invisible illness, but it's depressing me deeply how much my suffering is doubted on a daily basis. I'm afraid I'm going to snap and get so angry at my family especially, and not want anything to do with them. 

Does anyone have any advice on how to move forward? 

Thanks so much. 

 

My moms still in denial. She thinks omega 3s will fix me with exercise. Lol. This is after i have explained the disease and how it works multiple times. I used to shower twice a day. Now its a struggle to shower daily. You arent alone in this!

3 minutes ago, bombsh3ll said:

I don't know about your area but certainly in the UK there are lots of mobile hairdressers who cut/style both men and women. They often charge less than a salon too. 

Just type your area and mobile hairdresser/barber into google & I bet you find loads. 

Also if you have any local advertising sites (we have Gumtree) where people buy and sell stuff, there are often mobile hairdressers advertising on there. 

B xxx

 

I will look with those terms and see what i can find. 

5 hours ago, Pistol said:

@Derek1987 - why don't you ask the person that cuts your hair - they might know of something. Or maybe you have a family member, friend or neighbor who would cut your hair for you? 

I dont have a dedicated person that cuts my hair. They are different every time.  No the last question. 

Haircuts now for me is a big deal. I have been going during the week when nobody is there so i can get in and out. The heat is really messing with me. Does any sort of in home haircut service exist? Im male obviously. I dont know if this matters. I figured asking on here would be quicker than google searching.

1 hour ago, Pistol said:

@Derek1987 I also believe that it would be beneficial to you to see an autonomic specialist at this time. If you apply for SSDI based on anxiety your psychiatrists eval may be enough but you will be assessed on that diagnosis. If you want them to consider the syncope/ dysautonomia as a reason for disability you should see a specialist ( I understand that you say the physician that is seeing you for your dysautonomia symptoms is a specialist but if the treatment is not working I personally would seek a second opinion ).  

Yeah i see an autonomic specialist and im still the same. This is her bio if you are interested.

https://semmes-murphey.2dimes.com/debbie-turner

I was offered to go to vanderbilt initially but in my ignorance i was like well if i have a specialist here in my city, ill just see her. But now im officially iust waiting to go to vanderbilt after my recent referral.

If i get denied, thats when i know my attorney will really start to help me. Like i said, i did explain i have autonomic dysfunction and it causes this, this and this. 

Social security might of zoned in on anxiety because they feel my autonomic dysfunction doesnt meet the criteria of disability. Who knows but thats where my attorney can help me.  Either way, ill win eventually unless i get better.

I hope i can talk to my examiner and be like my anxiety isnt just mental, its physical. My test results prove it.  And describe what autonomic dysfunction is. If i can explain my condition, that will help me out. If not, idk.  We will see what happens.

32 minutes ago, Pistol said:

@Derek1987 I agree. If you try to get SSDI on grounds of anxiety rather than POTS ( which apparently you do suffer from ) then the syncope will not matter b/c it really is not a symptom of anxiety. So I understand why they would want you to get a second opinion - to determine what the ANXIETY does to you. You no longer are asking for SSDI due o the syncope/ POTS. This is a whole different ball game! 

I put what conditions i suffer with. POTS was at the top. Anxiety was in there. On the back of the questionaire i explained that my POTS is a cause of major anxiety. I explained how the disease works. I told them about the bloodflow to the brain problems, syncope, and all of the other issues its caused me including the anxiety. I included it all together but under the umbrella of autonomic dysfunction. 

My wife was sent for a mental evaulation even though hers was physical pain from various conditions she has. They tried to say her physical pain was from depression. They didnt do an anxiety exam however.  

Im going to be completely honest. And do my best. I just wanted any advice i could get because of how crooked the system is. 90 percent of doctors ive seen either dont care or doubt you.

I did hire an attorney but she wont get anything if i win the first try so i know she isnt interested in helping me right now so i havent even contacted her. She told me to fill out the application and come in to put her as my attorney on paper when i turned it in. Then her assistant was talking about winning at the hearing. And i was like i need to be approved before that. So im doing everything i can on my own to be approved. 

So I have a SSDI case pending. First application.  After they got all my doctor records, they are saying  that's not enough to approve my claim. 

They are sending me out for a mental and anxiety evaluation. I have hyper pots and elevated adrenaline in my body. So it seems like they don't care about the fainting issues, heart palpitations and all of the other suffering that goes on with this disease. Looks like they are focusing on the anxiety side of things.

My psychiatrist even has a letter in my doctor records mentioning the sympathetic  and parasympathetic nervous system dysfunction causing high anxiety, rapid heart rate, fainting etc and says I am permanently disabled.  

Has anyone ever gone through this? How can I prove to them my anxiety is horrible.  I mean it really is. I had an autonomic nervous system test done showing my adrenaline is way above normal. A normal person is a 1. Mine was an 11. I wonder if I can take those records and explain to him what it means. I know a regular doctor won't understand the graph. Only my cardiologist and neurologist understood it.

On the letter it states " the medical evaluator may not do some of the tests we ordered or that other tests are needed". 

Wondering what kind of tests they can do to check my anxiety. I know I am disabled now. They need to know it. I know that the doctor is assuming I am not from the jump. I mean a lot of people  fake disability and it ruins it for others.  My wife for example.  The doctor said she was faking and trying to use the system.  It took her 3 years and a hearing  to be approved. I don't have that kind of time.  Long term disability will only pay me up to 24 months. I wouldn't be able to hold a job in my current condition. 

All advice and wisdom will be appreciated.  Thank you!

On 1/7/2004 at 3:45 AM, Timbo said:

Sometimes when I roll over in bed at night my heart will speed up for 20-30 seconds and then calm down. It's not a symptom that really bothers me, but I am curious if any of you experience this.

I get this like every freaking day. Good to know I'm not alone in that. 

I've been stuck in bed since September 2018. Yesterday I had a horrible day and I didn't even do anything. Today I felt better but my body is still screwed up. I put some air in my tire for my wife's car. I have a mini pump I got from Amazon. It took me 10 mins. I even sat down in the air while the tire filled up. My heart rate jumped up 30-40 beats and my BP shot up. Lower number was 103. Laying down brings that number into the high 70s low 80s. 

I feel like I'll never be the same. I'm going to Vanderbilt eventually. Maybe they can do something.

We are trying to move soon(hopefully) and I feel so guilty I won't be able to do much at all. I'll hire movers. But packing will not be possible. I'll try and do some here and there.

Still early on in my journey to a recovered state hopefully. 

6 hours ago, bombsh3ll said:

They will certainly figure out if you have an adrenal problem. If your adrenals are fine but autonomic nervous system malfunctioning, unfortunately they will not be able to help but at least they can rule out adrenal problems. 

Have you had a blood or urine test for catecholamines (noradrenaline, adrenaline)? This is pretty standard in anyone with POTS or similar symptoms these days to exclude adrenal tumours/overactivity. 

B xxx

I did two 24 hour urine tests. They said they couldn't get a result. They actually drug tested me because they thought I could be diluting the urine test with water. So I got nothing from that. But I did do blood work during a TTT. She said my adrenaline was elevated when I was standing but they screwed up the test results somehow. She was like we didn't collect the result properly. So I don't even know what that means but I do have higher adrenaline when standing. 

So it sounds like me seeing this specialist for the adrenal glands is probably a waste of time most likely. I'll still go but these medical bills keep growing. 🤦‍♂️

3 hours ago, bombsh3ll said:

The question is, is the excess catecholamine production coming from your adrenals or your sympathetic neurons. If it is the latter, removing the adrenals wouldn't help.

B xxx

I didn't know we could have adrenals from sympathetic neurons. I don't even know what that is. I'm scheduled to see a specialist who deals with the adrenal glands. Will they figure this out? 

I have lack of faith in doctors. My autonomic dysfunction specialist tells me I have hyperadrenergic POTS but never told me to get a scan of my adrenal glands to make sure I didn't have any tumors on them. It was actually my psychiatrist who told me it could be a possibility. So I got tested. No tumors.

3 hours ago, toomanyproblems said:

Because I have primary Addison's and hyperPOTS I have long fantasized about having my adrenal glands removed. They aren't producing any natural steroid anyway but my endocrinologist says for some reason they can almost always produce adrenaline. They aren't doing anything useful for me. Only bad. But no one would do the surgery I'm guessing. 

Would that even be safe to remove them? Wouldn't that make us more prone to fainting?

I've felt very mildly dizzy the past couple of days but my BP was high enough not to faint. Normal range. I feel like I'm laying on my back in the ocean and my head is floating over really small waves. It's very mild. Not sure what the exact definition of dizzy is in POTS. I felt a little spinning action yesterday. Not near the spinning where I took a long hot bath just trying to relax and tried to get up and couldn't walk a couple months ago.

I do have midodrine but I haven't taken it since my BP was normal. 

Another odd detail. I haven't had any caffeine in a couple of months. I drank a 12 ounce coke. It dropped my top  BP number 20 plus points. I thought that was odd. My top number is usually consistently a little high. From 130-140 average. The coke dropped it very quickly. Don't know what to make of that.

5 hours ago, Scout said:

These are some BP readings from a day ago, minutes apart. It bounces around like this all the time. 

Does anyone else's readings look like this?

I can't wait to see my specialist soon. 

Might just be my phone but I can't see the pictures.

I have been having trouble getting over this bacterial infection for at least a couple weeks now. And I'm on antibiotics. Just when I think it's going away, I wake up in the morning and I can just tell my throat is getting those white patches back. I've never had this much trouble getting rid of it. I get this every 1-2 years. I get these White patches on my tonsils then I take antibiotics and I'm fine. I used to even work through it fever and all. Now all I do is rest. I figured I would be over this by now. 

I've always wanted to get my tonsils removed because of this. I wonder how well I'd do with surgery. That's a whole different topic though.

1 hour ago, potsiebarbie said:

I cried during my NCS/EMG this week. Lol I was not thrilled with the shockey thing. Not thrilled with the needles either. Actually the needles on the right side were bearable; I think because that is wear the neuro was sitting. Reaching over to do the left must have been a bad angle. Anyway, did you get your results? 

Yes. And just as I expected nothing is wrong. The test did give me a quarter sized dark black bruise though. And I have to pay to get stabbed and shocked. Crazy concept.

Basically he is referring me to Vanderbilt. Im seeing a specialist here where I live but I think Vanderbilt will have a lot more knowledge/tests. I didn't wanna go because it'll be a 3 plus hour drive. That's gonna be so hard on me. @Pistol been telling me to go for the longest. Hopefully it'll be during the cooler months. The summer is brutal on me. 

14 hours ago, JimL said:

It hasn’t helped. My wife thinks most medical problems are psychosomatic. One of her brothers had appendicitis and her mom had to take a shower before taking him to the hospital. Their attitude is just get over it or yourself. Add that to the list of clueless doctors and I’m on my own.

Sorry man. Not fair is it.

16 hours ago, Pistol said:

Dear @Derek1987 - I totally get it! My husband - thank god - is a pro in living with a Potsie, so he does not ask things of me that I cannot - or should not - do. Hanging a curtain is too much to do for you for several reasons: standing and lifting your arms above your head. that activity could easily result in syncope, it would for me. I am sure it is difficult for your wife to understand why a "simple" activity such as hanging a curtain is so hard for us and she might blame this on laziness or procrastination when in reality it is simply not something that is good for you to do. Have you asked her to read our family guide? You can find it here: 

I understand that you have been referred to a specialist nd be hopeful that you CAN get better with proper treatment. Until then try to ask a friend or neighbor to do tasks that are not wise for you to do. And regarding a date:  how about getting the kids out of the house and ordering take-out and a movie? I used to rest up all day for a "date night" like that. And although I would fall asleep half-way through the movie it was till some "Us"-time and counted for a date. --- 2 years ago we celebrated our 25th anniversary and went out to a restaurant ( hven't done that forever ). We ate, had one drink and he practically had to carry me back to the car. It took me 3 days to get over it. So - being together, having a nice talk or sharing a joke or meal in good spirit is like a date for us now. And it is cheap, too! 

The thing is my wife goes to all my doctor appointments. She hears the doctors and even acknowledges my limitations. But she's always complaining about how much she has to do. And that's because I'm out of commission. So I feel guilty and it adds stress to me. 

As far as dates, the only thing we can do is watch movies at home. If I were to go out to a restaurant, I wouldn't be able to make it. The crowds, the noise, sitting up too long. If I somehow made it through, it would be torture and I'd be sick for a few days. 

She thought i might of gone to the movies with her yesterday. I'm like really? I barely survive doctor appointments. I think she knows my conditions, she's just unhappy with it I feel like. 

She has her own disabilities as well. I'm always like hey slow down. That's enough for today. Did u take ur pain medicine? She gets mad at me telling her to take her meds. I bought her a tens machine, supplements, hot patches. I tell her no don't worry about cooking today because she's hurting. 

I don't think she realizes just how bad I am. I don't know. She understands more than anyone else in my family though. Nobody understands. The last time I went to the ER, I was explaining my story of being bed ridden since September. The nurse had a weird look on her face and said I just saw you walk. I tried to explain but I don't think she received it. It's hurts nobody really understands.