Derek1987

Sorry I make a lot of topics. Just trying to collect all the information and knowledge I can so I can help myself and my doctor figure things out. I've been out of work since September. My job consisted of me walking and being on my feet 95 percent of the day. A normal work day for me is 8 to 10 hours. Since my last fainting episode in September, I noticed sometimes my thighs and calf muscles burn as if I've been exercising. Usually when you exercise you get the burning feeling and when you stop, the burn goes away shortly after. I just carried in some groceries and my thighs and calf muscles have been burning for about 45 mins to an hour. I can also feel my calf muscles with a pulse. What do you guys make of that?

Thanks for the response. If the tick virus damaged my nervous system, I wonder why it took so long for the major symptoms to happen. The fainting, nausea, shaking more than usual stuff. I've only gotten sick like once in the past few years and I took antibiotics for it . Me and my wife we both sick at the same time. I guess I'm just hoping it doesn't get worse. My symptoms seem to get aggrivated when I get out of bed and try and do normal chores. There's a homeless cat we feed. We bought a big plastic container and put blankets in it to protect him from the cold. I took a razor knife and cut a door. When I was done it was like my nerves were shot. Hands shaking and nauseated. I had to lay down and rest from an easy task. Pathetic. You guys have been on this journey longer than me. I know it had to be most terrifying in the beginning. Where I'm at now...

I already did the research and I see I'm negative for Lyme which my specialist already told me that part. But looks like I tested positive for Rocky mountain. I don't understand IGG, IGM, IF etc. I'm guessing there is different kinds of Rocky mountain? She never specified what tick illness I had but it was no longer active. I lived around woods for most of my life so I'm not exactly sure when this happened to me. I rarely went to the doctor when I was sick. I've battled extreme fatigue for a long time. I know I've had heart palpitations since my early 20s. They might have gone back further I just don't remember. Anybody understand this lab report?

Another question since you let me know about blood pooling in other areas. When I was being lifted into the standing position, not only did my hands get red, my face was flushed, hot. Do you think that's related or just another symptom of my condition?

Interesting. When I did my tilt table test and they rasied me to the standing position, my hands were extremely red and my hands felt different. My wife pointed it out to me. I guess I could describe the feeling like my head felt when the table tilted backwards and I felt the pressure in my head. It might be happening in my stomach too. When I participate in being a normal human being by standing and going to a couple of places, my stomach seems to get irritated. I have a weird sensation going straight down my stomach in a line. That might not be blood pooling though. Idk.

Thanks for the answers everyone. With that being said, I think that rules out pots for me and isn't why I faint. I still have elevated heart rate instantly upon standing. Tingling in hands. I see stars. Nausea, fatigue. Heart palpitations, irregular heartbeat and fainting issues. In other words I guess I don't know what official diagnosis I might have.

How do you know if blood is pooling in your legs? Is it just because your blood pressure lowers when standing or can you actually feel or see it? Or is there a test to see it? My specialist thinks my adrenaline just drains me to the point I faint. Which might be true. Today I was laying in bed and my hands and feet were cold but my palms were sweaty and my face was flushed.

I don't think you can crush, chew, or break any extended release medicine. It would probably just make the medicine hit you instantly. I'm taking 30MG 3x a day. I'm about to start 60MG 3x a day. It'll only be my second week. This is not the extended release version. It does slow my heart rate down but I might be getting increased symptoms from it. Like feeling nasuauted has increased and also I'm getting hot flashes where my forehead starts to sweat a bit. But everyone is different. All I can say is just give it a shot. What are you officially diagnosed with?

Could this be a medicine side effect and need to eat food with your meds?

Do y'all sweat when you have them?

This happened to me in October 2017. I was out to eat at Olive garden. I was leaned fwd eating and I leaned back when I was done. I got lightheaded which didn't alarm me at first because it's happened before, but it progressed really quickly far more than I ever experienced. I got really hot and started sweating. I told my family something is wrong . Then my vision and hearing and ability to move went away. The scariest thing was, I was aware. I was so weak I couldn't move or speak. When I was in the ambulance, the paramedic told me my blood pressure is coming back up. It was so hard to speak even then. I developed serious PTSD after. The doctor shrugged it off. It took 3 fainting spells to get doctors attention. Although it the 2nd and 3rd weren't as bad. I could still move but I felt the fainting feeling and tingling in my hands and arms just like the very first faint. The other day I felt like I was going to faint at Walgreens. I'm usually in bed all day because of my symptoms. But that day my wife drove me to the doctors and we had to do a couple more errands. So I was upright for about 4 hours. I think that's what caused episode at Walgreens. Otherwise I don't feel lightheaded as a symptom. It just hits me. Usually I feel nauseated all day. A weird feeling in my stomach. Hot flashes. Weak. Out of breath by simple tasks like taking out the trash. I'm 31 and my job was walking for 8 plus hours so definitely not the norm. Hot flashes might be the new meds I'm on though idk. The only way I've been avoiding it is laying down like an elderly person almost all day. Sigh

No they have not. But I let my specialist know about it. The next time I see her, I will let her know about it again. I've only seen her once. So I'm just getting started with figuring things out.

Seems like it's getting worse. Went to sleep nauseated and woke up immediately nauseated. I always have some weird feeling in my stomach too. I really started noticing it when I had my 3rd fainting spell that happened at work. It's a weird feeling that goes in a line straight down my stomach.

That's a blessing for sure.

Hopefully they have a better experience than I did with the neurologist. He made me do simple tests like walk in a straight line. Talked to me for 2 mins and left. His doctor records said I was fainting probably due to anxiety. It was a joke.

I can't really give you any insight but my blood pressure is getting too low for my liking. But I'll get spikes that go way high. I'm pretty lost. I drank some coffee to boost my pressure up. Although I can't drink too much caffeine anymore or I'll feel really sick. I'm 31 now and relied on caffeine to help me through work through my 20s. Like 5 hour energy etc. My gf at the time was always mad at me for being tired all the time. So I guess I've been dealing with this longer than I thought. I'm just now having more major symptoms. I just started taking mestinon to slow the heart down which elevated my pressure to where I felt sick. So I was put on Lisinopril to counteract that. It seems the Lisinopril is cancelling out the mestinon because my heart rate is back to being in the 130 plus area when I'm standing up. When I took mestinon alone, it would go to about 110 or so. And my blood pressure is low now. So it seems like only the blood pressure medicine is working and I don't want it to go too low because I already have fainting episodes. So you are taking meds to raise your blood pressure and it's not working?

I'm assuming it will come out fine since they already found out I was exposed to ticks. Or maybe that would cause an anomaly? My short term disability at my job is waiting on the results of the MRI to determine if I'm eligible for long term disability. I don't know why they are waiting on that as the specialist said herself I can't return to work until she sees how I respond to treatment. I even sent the disability company a statement from her saying I couldn't return until I see her again and see how I'm responding to treatment. It's like they are looking for any reason to cut you off . I hope I don't have to appeal it. I'm legit sick. Heck, 3 days ago I almost had a fainting episode in Walgreens. That would of been embarrassing. So if they force me back to work, I guess I'll be back on the ground like the last time I was at work lol.

Anyone else have issues because something was wrong with their brain? This was my first MRI ever and I don't even really know what they are looking for or what they can find.

I'm pretty confused today. I took the pyridostigmine this morning. Initially, that medicine shot my blood pressure into 160s over 110s.But today I didn't take my Lisinopril. I was going to wait and make sure my blood pressure went up. It didn't. Laying down I was 120/70 for blood pressure with 60 BPM. I kept checking it every few minutes and it stayed in that range so I haven't taken the Lisinopril. I just took a shower. My blood pressure rose 120/93 with 150 BPM. Im laying down now to get my heart rate down. As usual... my blood pressure is never stable. Last night I woke up in the middle of the night with hot flashes. This is a first. I also felt really nauseated and weak yesterday. It seems like the pyridostigmine might of increased my symptoms although it did slow my heart rate down. I'm lost.

Well I've had anxiety as long as I can remember. After I fainted the first time, it got really bad, and that's because I was scared I was going to faint again. So more like PTSD. I'm not even sure if I'm diagnosed with POTS officially. The specialist just talks about the nervous system. I'll probably get an official diagnosis after I do all of her tests. I have a brain MRI tomorrow. She did say I don't need compression socks and she thinks my adrenaline goes nonstop. But at the same time she showed me an illustration of a person with autonomic dysfunction and how blood flow reaches the brain less and less the longer they stand up. So I'm confused. Sorry if I've repeated myself to you. I forget who I answer to. I have bad memory loss problems as well. It was a pain to get in the right direction. The hospital didn't think anything was wrong with me on my 3 ambulance rides. The neurologist said I was passing out probably due to anxiety. He was a joke. I only talked to him for like 2 minutes and he left . Finally my cardiologist sent me to a heart doctor who deals with electrical signals in the heart. He came in and was just like I think you have autonomic dysfunction so I'm going to refer you to someone who specializes in it . Another problem I'm having is my insurance won't pay for a heart monitor implant because I'm under 40. I was denied twice. I'm going to see if my autonomic dysfunction specialist can do anything for me on that. I've had several palpitations today. And skipped heart beats or out of rhythm. My head is killing me. I'm getting more headaches. Could be stress. But i also feel nauseated everyday. Not major but it's not normal. I just feel like a sick person.

Today I just started mestinon and Lisinopril. The Lisinopril to lower my Blood pressure. My heart rate laying down between 59-64 BPM. Without mestinon, it's usually in the 70s. I actually started taking mestinon a couple of weeks ago and it was making my blood pressure go way too high so I had to wait to see my primary care doctor to get me back on my old blood pressure meds. So today is the first day I've had both meds. My heart rate is lower and my blood pressure has gone from good to high. It fluctuates a lot. But it hasn't been as high as it was when I took mestinon alone. My concern is, does this medicine help blood get to the brain? I'm reading through these forums and I don't understand how some of you are able to work. My disability through my job is under review to go into long term. There's no way I could work now.

I don't know enough about this disease as I'm just now getting treated. I take xanax for anxiety. This disease has me so worried I take Xanax for panic attacks. I already had anxiety before but wasn't taking anything for it. It took me 3 different psychiatrists to actually prescribe me a benzo. They tried celexa, Zoloft, and a few others which did absolutely nothing for my anxiety. I needed a benzo.

I did a 24 hour urine test. I'm not sure if that's the same test you are referring to. I've never heard of hyperPOTS. The very first time I fainted I know my blood pressure dropped because it was still low when the paramedics got there. I was sitting upright.it was the worst of the 3. Going black and going deaf and unable to move. I was coming out of it when the paramedics got there but I was so weak and could barley move. In the ambulance laying down is when the paramedic said my blood pressure is coming back up. The next 2 fainting spells, I layed down immediately as I felt it coming on. My blood pressure was high when the paramedics checked it the 2nd and 3rd time. I was laying down when they checked it. Actually the 2nd fainting spell I was already laying down. I was laying on my left side with my head propped up on my hand. I panicked and stood up then it seemed to get worse so I layed down. Then the fainting feeling went away. I still went to the hospital. Basically I don't know what's wrong with me lol. As far as the tick born illness, I think she found that in my blood work . I just took mestinon now that I have the proper blood pressure medication to counter act the mestinon giving me higher blood pressure. I'm pretty nervous about taking medication. Reason being these doctors don't study drug interactions enough. My autonomic dysfunction specialist actually told me to keep taking a beta blocker with the med she is giving me. I'm thinking okay I don't want my heart going too slow. I consulted with my primary care doctor and she agreed and put me back on Lisinopril like I had taken in the past. I also wonder if Lisinopril can cause damage to the nervous system itself. I fainted for the first time 6 months after taking Lisinopril. Anxiety is quite exhausting worrying about everything.

I'm a console gamer. Mainly play sports and shooters. And red dead redemption 2 when I can afford it.

I've never heard of a nerve conduction study. My specialist said my nervous system has been damaged from the tick illness and the medicine pyridostigmine br will reverse the damage. I don't trust any doctors. I always challenge their word with research. She also doesn't think I have POTS. She thinks it's more of my body won't stop producing adrenaline and my body gives out. That might also be an issue. It does sound like I have POTS though. When I stand, immediately my heart rate increases by around 50 BPM. She doesn't believe I have POTS because on the 10 minute or so tilt table test, my blood pressure remained high in all positions. She said she doesn't think I need compression socks or anything. But then she showed me a illustration of someone with autonomic dysfunction of a person standing up. The longer they stand, the less blood gets to the brain. Isn't that POTS? So I'm pretty confused. This medicine she gave me combined with my blood pressure medicine might get my symptoms to look good, but how do I know blood is getting to my brain properly? I don't think I'll know until I try and live normal. As for now, I feel sick everyday. I get nauseated a lot but I haven't thrown up yet. I just know I don't feel well. Again, thanks for the responses to help me get through this. It's pretty terrifying not having control over your own body.