Derek1987

I've almost choked several times. I'm wondering if this is part of dysautonomia or possibly a side effect of carvedilol. I looked up side effects of carvedilol and one of the side effects is hard to swallow. Is this a symptom of dysautonomia as well? Im hoping this is a medication side effect only.

On 5/11/2019 at 4:56 AM, Pistol said:

@Derek1987 - I have heard from other posters that this can be symptom of low blood volume, but I don't know much about it. 

Doesn't sound good. 

On 5/7/2019 at 7:49 AM, FileTrekker said:

Rauwolfia is pretty dangerous stuff. I wouldn't try it.

Can you elaborate? Never heard of it. Pretty sure I have hyper pots. 

This has been going on a long time now I just never mentioned it. Everyday at some point from my knees and below I feel my legs pulsating. I've been mainly stuck in the bed since September. Anybody experience this and find out what exactly is going on?

On 5/8/2019 at 5:17 AM, Pistol said:

I would discuss this with your doctor. IMO any drug that can potentially cause dependence will do so if taken regularly but I think if you continue taking it infrequently you should be OK. I take Ativan at times and only use it if I absolutely have to for this reason. Also - since you have an increase in your anxiety symptoms there might be other meds you can take daily and keep the clonazepam for emergencies. Your doctor will know more about that. 

I'm surprised you don't take any benzos regularly. I take 4mg of Xanax per day. I try and survive on 3. It definitely helps but definitely doesn't fix everything either. 

When I collapsed at work back in September, once they gave me Ativan into my veins, it stopped my body from trying to faint. I actually fell asleep for 10 minutes. My body was constantly trying to faint for like 45 mins until the Ativan kicked in. I was basically trying to fight from fainting which was probably making my body want to faint lol idk. 

49 minutes ago, bombsh3ll said:

I am in the UK and still fighting for release of my occupational pension, but I think having EDS diagnosed helped me get government disability. 

You have mentioned your father having similar problems, & EDS is hereditary. Any current or previous flexibility, skin, joint, digestive or surgical problems?

If you think that could be you, look up the Beighton score & maybe see a geneticist. 

B xxx

I'm not sure about those issues you mentioned. My dad and I don't talk on a regular basis. But I did talk to him recently about my health. I know he takes bystolic to slow his heart rate down. He takes a medicine for tremors and I know he has heart palpitations. His hands have shaken his whole life and so have mine. He said he just started getting heart palpitations but I got them in my very early 20s. Those are symptoms we share but I have more symptoms and more severe. My dad is able to work and function. One of my doctors told me usually when a disease passes down, it gets worse. My autonomic specialist doesn't think it's hereditary but who really knows.

Are they accurate with blood pressure and heart rate? If so, it seems like they would be easier to use. One of my doctors used this kind on me. I forgot what doctor as I'm seeing so many now like I'm sure the rest of you are. 

50 minutes ago, KiminOrlando said:

On it already. It was quite a fight and I had an attorney. 

What was the diagnosis that gave you the win? Or Any other details you want to share on how you did it.

1 hour ago, KiminOrlando said:

Hey, @Derek1987. We have the same job! Tedious, isn't it? And I have yet to get paid. Where is HR? I would like to complain.

Lol I used to think it would be my dream job. Are you pursuing disability or on it already?

Yeah my career changed to professional laying down in bed. Went from always vertical to always horizontal. I have a few side jobs. Taking medical tests. Waiting in a lobbies. Looking at documents that tell me how much I have to pay etc. 

23 minutes ago, Skiller said:

I get scared of the night some times because I think in all of the 3 am video on the web are true    but I now their fake but my nerves get the best of me if you are like me in this situation please comment below 

Which videos are you talking about? I'm pretty scared all the time. Not because of videos. Because of my illness. If that makes you feel any better....

5 minutes ago, Pistol said:

@JimL - my first TTT went the same as yours - passed out cold after nitro. At that time they diagnosed me with NCS - they didn't find out about the POTS until after another TTT and neurotransmitter labs. 

@Derek1987 - if you pass out during the TTT they just return the table to the horizontal position and people regain consciousness rather quickly. 

Question. When the passing out occurs on the TTT, is it because your blood pressure dropped too low? When I passed out at Olive garden I was sitting up and I eventually regained my hearing and sight but I couldn't move or talk. When I was in the ambulance obviously laying down, he told me my blood pressure was coming back up. I was still super weak and answering the paramedics questions was like trying to bench press 300 pounds. I eventually gained all my strength back at the hospital. I just felt like garbage for a few days after.

15 minutes ago, JimL said:

Nitroglycerine. It dialates arteries and if you have some sort of orthostatic intolerance, it may induce passing out. It did with me. 

Glad they didn't do that to me or I'm sure I would of passed out. How did they get you to come to?

14 hours ago, JimL said:

I passed out when I had a TTT, a few minutes after they gave me nitro. Not fun. Never passed out before. 

Not sure what nitro is. What's it's purpose? 

6 hours ago, bombsh3ll said:

That's exactly how I was when I had mine in Feb. I really thought my blood levels would show a hyperadrenergic picture, but they were actually normal in both positions! I was frustrated as I was looking for something to treat. Too low catecholamines, there is midodrine and droxidopa, too high and there is clonidine, alpha & beta blockers etc, but nothing in between!

I hope you gain some info that leads to a helpful treatment, please keep us posted with your results.

B xxx

Me too because I'm still hurting from that TTT. I have a small fever. Sweaty hands. Double bags under my eyes. Nausea. Feel so sick. And I have a neurologist appointment tomorrow. I am so done right now. Hope you get answers and feel better as well.

4 hours ago, Pistol said:

Hi @Derek1987 - welcome to the club!!!! That stinks that they think you are hyperPOTS. But at least you will know then. I have it too and can give you many tips - but mostly it will be meds that take the edge off. Regarding the TTT - isn't it the most sadistic medical procedure ever invented? Did you pass out? --- I hope you will feel better soon. I will PM you about some meds that have helped me. Rest up!!!!!

The test has me feeling like crap still. But during the test, it was torture. Especially when they leaned me up. I didn't pass out but there were moments where I thought it was coming. I got so hot and sick. My hands were shaking hard and sweating and I was flushed. Later on in the visit, I got nauseated after drinking water. And I was ill for the rest of day and night.

Please PM me whatever tips and info you have. Like I said, I should have this diagnosis next week. You thought this all along. They were treating me for Rocky mountain fever at first. They thought that's what messed me up. I just hope my blood work comes back correct so I can be diagnosed officially. I want the right diagnosis of course but the sooner the better.

1 hour ago, joshrandall said:

I have  was diagnosed IST, from pssible relating to dysautonomia, i went vegan for a while and tbh really got alot better, eating very good food. Then lately ive put alot of weight on, started to drink alot be unhealthy, takeouts, and I just struggle with the debiliation of this condiiton and the, chronicness, im 28, also this is so hard that lack of validation, nobody thinks there is anything wrong with me its really upsetting.

Also I dont know If I have something relating to adrenaline, but when i get adrenaline angry I pretty much feel like im gonna die and pass out.

can someone chime in.

 

Just struggling mentally.

Hey bro. Not sure what IST is but I'm 31 and my life is drastically different. I'm bed ridden at the moment. Have been since September. Gained weight. Depressed. Scared. PM me If you wanna chat. You aren't alone. Things will get better. It just takes awhile to get this stuff figured out. Hang in there. Like I said, hit me up if you want to chat. I would add more to this post but I'm so tired from my doctor appointment. 

It was torture. When they leaned me up, my body did not like it. Got really hot and flushed and ill. They took blood while I was doing the TTT. They gave me some ice packs. They think I have hyperadrenergic POTS. They think this blood work will prove it. Something weird though. I've taken two 24 hour urine tests and she said they both appear to be tampered with and diluted with water. Which I didn't do of course. They don't think I tampered with it but they gave me a drug test to rule things out. I'm Soooooo tired.

26 minutes ago, KiminOrlando said:

Is your doctor calling this a Panic attack or was it just an arbitrary term you used? I see the Xanax referenced. What caused them to prescribe that? 

I get spinning too. I don't have panic attacks. Mine is dysautonomia and craniocervical instability which puts pressure on my brainstem. There are days I have trouble walking. I basically bounce from wall to wall, stumbling, like I am in a carnival funhouse.  Nothing makes it stop. I just wait it out.

The condition is causing panic attacks. My body is in fight or flight a zillion times a day. And when something like this happens to me, the panic goes into overdrive. But yes panic attacks is officially written in my psychiatrist Dr records. I've had anxiety my whole life. When the faint spells started happening, my anxiety amplified. From the fear of fainting and I guess the high amounts of adrenaline. I did an autonomic nervous system test that apparently shows my adrenaline is way above normal. A normal person was rated a 1. Mine was at an 11. I'm sure it goes higher than that when I'm really feeling fight or flight. 

9 hours ago, gertie said:

How did you get the spinning to stop?  I have POTS & Meniere's disease.  What you experienced sounds like Meniere's to me. I sometimes think it is more frightening than Dysautonomia.   Did you get nauseous with your vertigo?   Maybe I'm not allowed to say this, but either Ativan or Valium  sometimes helps with vertigo.   

It stopped on it's own but I still didn't have proper balance.  The spinning seemed worse when I closed my eyes. I get nausea for no reason all the time. Not necessarily set off by anything but sometimes is.  I took 2mg of Xanax which is what my doc said I could take during severe panic. It barely phased me. Too much adrenaline I guess. My hands were sweating and shaking. Could have been caused by the panic. My hands always shake to some degree though.

@Pistol or anyone who can answer. Is dizziness and loss of balance a sign of fainting to possibly come or is it it's own symptom of this disease altogether?

4 hours ago, Pistol said:

@Derek1987 - I live 1 hour away from the nearest hospital and used to have to frequent the ER often. I always had my husband drive me but once or twice I called my PCP and he at that time advised me to call the ambulance ( which I did not ). I personally think that if your symptoms are such that there is concern for a true emergency I would definitely call 911. Also if you are not able to handle a drive to the ER or if you feel you need immediate help. What @MomtoGiuliana said is also a benefit from calling 911 - they can check you at home and you may find that you do not need to go. But ALWAYS: if in doubt - call 911!!!

The medicine you took to bring up your BP - was it Midodrine? That will cause scalp tingling - it is a "normal" and harmless side effect. 

Yes that is the medicine. I asked the nurse practitioner about it and asked if it was a side effect. She said no. This is why I don't fully trust people in the medical field. I brought my test results to show a cardiologist and I got a nurse practitioner. At least she knew about the disease a bit. She was saying I just have to find out what my triggers are. She gave an example of spicy food. Someone she knows has our condition and ate spicy food and set them off. This too happened to me months ago when I ate some peppers. But I was so dizzy and uncoordinated yesterday, I looked like a drunk person I'm sure. 

The discouraging part about this is, I usually bathe this way. Lay down in the tub with 2 or 3 inches of water. I can't handle anymore warm water or I feel Ill. I lay there and relax. Then I get up and shower. I guess I can't do that anymore. The discouraging part about that is my condition must be getting worse. I guess....or maybe it was just a bad day. Thanks for the replies guys.

So I was laying in the bathtub for about 20 or so mins. I felt decent other than a headache. I get up to wash and I couldn't. My balance and coordination was way off. I crawled to my night stand in panic and took a medicine that starts with a M. Supposed to help with that and bring blood pressure up. I felt like the room was spinning. I've had these feelings before but not this severe. 

I didn't want to go to the hospital but the spinning feeling wouldn't go away. I put on a shirt and pajamas. My wife arrived home and I told her what's going on. She was urging me to go. The spinning wouldn't stop. I thought I was going to pass out. It is by far the scariest symptom of this disease to me. I eventually gave in and I got taken to the hospital.

My blood pressure was high but everything else checked out which I knew would be the case. Especially since I took that one particular medicine. The NP actually knew about the disease. The spinning went away but my balance was off. I had to lean against the wall to give a urine sample. There was really nothing they could do for me. So I guess a question is, when is it time to call an ambulance?

The new symptom I felt was when I was at the hospital. The whole duration I was there, my scalp was tingling as if the skin had fallen asleep. It even went down the left side of my face for a few minutes then went away and remained tingling on my scalp. I got home and was determined to shower. I almost fell but I made it.

Now I'm in bed fatigued and discouraged. 

6 minutes ago, Shepard1 said:

What is your actual temperature when feel off colour.   GP practice waiting rooms can be a nightmare if you are prone in picking up bugs easily.  Many years I dreaded my son getting sick after hours because when I took him to the after hour doctors I would end up very ill the next day with not my son's bug but something I picked up the the waiting room.

In my late teen's I got a severe bout of glandular fever (40.3 C/104.5F)  and early twenties I used to have high spikes in temps with sometimes feeling off 39C/102F but not always.  It was felt that the wide range of temperatures where due to a brain stem reset as my breathing was also affected.   In my 30's these temperature spikes ceased.  Not long after getting diagnosed with dysautonomia I by accident discovered that these non-infection related temps had restarted again 39C/102F

If achy maybe you picked up some bug some were.  Hope you feel better soon.

I'm feeling better at the moment. Thank you. I know I'm not getting sick. At first I thought man I'm coming down with something. Then it goes away. It's very low grade fever. I don't know the actual temp but I have always been hyper aware of when I have a fever. And it always comes with aches. So it's happened a few times in the past few months. I think my body just can't do much activity at all and sometimes gives me a fever for some weird reason. 

I'm still recovering from Mondays doctor appointment. I'm feeling a lot better but those first 2 days after were brutal. Not just with the fever and aches which actually wasn't that bad but a sickness I can't describe. A sickness I've never felt until my body completely broke down this past September. 

I was just sitting here talking to my wife how I miss my teen years. I was always working out and playing basketball. Full of energy and strength. Sigh.

I still feel a fever. It's like it comes and goes.  It's back.

1 minute ago, p8d said:

I get low grade fevers when I am flaring from over doing it and sometimes just for fun (ha!).  I get the bad fatigue, malaise, aches, pain feel horrible.  I felt this way for 2+ years before my autoimmune disease was diagnosed which was after my pots diagnosis.  I still get this way if I overdo anything.  My Drs and I believe my dys is autoimmune and I saw my first improvement starting meds for that.  Keep asking for tests for autoimmune disease.  

I will bring up the autoimmune stuff to my specialist. What autoimmune disease were you diagnosed with if you don't mind me asking? 

Meds I currently take.

Carvedilol, alpha lipoic acid, Lisinopril hctz, midodrine, Xanax. I think that's it.