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? 

52 minutes ago, StayAtHomeMom said:

As far as I can tell you have the antibody for the spotted fever group or that rickettsia virus. It means your body has fought of one of the viruses in that group. If I remember my research right the tick bourne viruses can linger for a long time. Not sure how long the antibody would stay in your body though. That would be a question for your doctor. 

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 She never specified what tick illness I had but it was no longer active.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? 

2 hours ago, WinterSown said:

I can feel it flood into my legs. Take off your socks and look at your tootsies; mine are very very flush. If I lay down on my back and put my two feet up straight the situation can correct itself in a few minutes. Your fingers may also look very flush, your hands may hurt. Blood  pooling doesn't have to be only in your legs, it can be in your arms and sometimes gut and pelvis.

 

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?

21 minutes ago, WinterSown said:

I can feel it flood into my legs. Take off your socks and look at your tootsies; mine are very very flush. If I lay down on my back and put my two feet up straight the situation can correct itself in a few minutes. Your fingers may also look very flush, your hands may hurt. Blood  pooling doesn't have to be only in your legs, it can be in your arms and sometimes gut and pelvis.

 

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?

2 hours ago, StayAtHomeMom said:

My son and I both get hot flashes. I will be bundled up because it is 68 in the house. He will be doing dishes or something and talk about how hot it is. I shake my head and tell him he is hot flashing. His come back is he can't be hot flashing because he isn't as old as Grandma. (My mom is menopausal). Lol.  I make his check his HR and it is usually 120 or higher. When I hot flash I am 125 or higher. I usually hot flash waiting in line at the grocery store. 

Do y'all sweat when you have them?

On 10/19/2018 at 11:16 AM, Lainy said:

I had just finished cooking dinner for my family and sat to eat, about half way through eating I felt intensely dizzy and then passed out right on the table. Family says they couldn't wake me for several minutes.  They insisted on taking me to the ER because it scared them but I honestly was strangely calm, didn't feel worried or panicked. Kind of detached, actually. 

I have been struggling with headaches and vertigo for over a week that start about noon and gradually get worse through the evening but that was the first time I had even come close to passing out. I haven't been able to tie the headaches and vertigo to anything. In the ER they ran every test they could think of, including chest xray,  EKG, head CT, blood panel, etc but everything came back perfectly clear except for showing I was a little dehydrated. (despite my mandatory 3+ liters a day)

I've had no mediation or dietary changes, either. 

Does this sound familiar to anyone? Any ideas of how to ease the dizziness and prevent any more episodes where I pass out? I was very lucky to be sitting when it happened this time

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

46 minutes ago, StayAtHomeMom said:

I took a liquid medicine that helped that for a while. I took it for a week and my stomach feels a lot better. I don't remember the medicine or what it was for. I would have to look it up it was so long ago. 

Now I treat my nausea with kefir and Rolaids plus gas relief. Or if it is just starting a pickle or something tart like that settles it. My mom likes green grapes for her. 

Have they ever done a scope to see what was going on?

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. 

17 minutes ago, StayAtHomeMom said:

My neurologist is my POTS specialist. He didn't even do the normal neurological exam. Went straight into what tests have you had done and ordered retests and new tests. I wasn't so sure of him at first because he spend so little time with me but since seeing him my life has definitely improved. 

That's a blessing for sure. 

6 minutes ago, StayAtHomeMom said:

Stick with the neurologist. The HR change is what defines POTS. You could be normally that low or your blood volume could just be that low. Are you drinking lots of water and eating lots of salt?

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.

1 hour ago, Eraena said:

I haven't decided to take my BP in all positions until now, and I've noticed that it's low in all positions.

[Lying down]: Systolic 95-104/ Diastolic 54-60

[Sitting]: Systolic 80-105/ Diastolic 44-59

[Standing]: Systolic 93-105/ Diastolic 58-64

My resting HR is usually 53-65.

 Probably the reason why I feel lightheaded in all positions? I find that natural treatments and medicine isn't helping to raise the BP, or at least is not helping me feel less lightheaded and tired. I was diagnosed with POTS, but the doctor said it wasn't a definite diagnoses, and said that it could be something deeper. I don't go to the neurologist until January 22. I don't know if it is Dysautonomia, but something clearly doesn't feel right. I don't have a drop in BP on standing, and it seems everywhere it focuses more on orthostatic hypotension, rather than BP staying chronically low.

I know you all can't diagnose me, but I don't know where to go next.

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?

3 hours ago, Pistol said:

Hi @Derek1987 - whenever they order an MRI of the brain they are investigating the structure of the brain, to find out if there are any anatomical anomalies or tumors etc that could cause your symptoms. I had 2 of them over the years and thank god they were normal. But they have to rule out anything that could contribute your symptoms. If it is normal that does not mean that there is nothing wrong with you but rather that they can rule out brain issues. 

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.

55 minutes ago, bombsh3ll said:

I hope you manage to get some relief on your new combination Derek.

I would really love to hear about it if someone found a solution to get more blood to the brain that wasn't lying down! Many people seem to focus on what their HR or BP is, but mine can be normal or close to normal sitting yet I am still presyncopal. 

I also had to give up work due to POTS. I am a GP and nobody wants a syncopal doctor! There is a wide range of severity with dysautonomia though and many people do manage to work, albeit maybe less hours or in a less physical role. I struggled on with it for 4 years working 2 days a week, but I really shouldn't have been, and feel some relief having accepted that. 

There are a lot of different options though for medication and it may be that you find something that stabilizes you enough to continue working. Licorice Root capsules did this for me for a while - I wasn't normal but was much more functional and my quality of life (relatively speaking) was amazing until I developed tolerance to them over time. 

Best wishes,

B x 

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.

9 minutes ago, StayAtHomeMom said:

Is it true panic attacks or just POTS? Sounds like you probably had it really rough to get a POTS diagnosis. 

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. 

On 11/1/2018 at 3:28 PM, joiedevivre said:

I'm wondering because when I've tried it, it doesn't do anything. 

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.

8 hours ago, JoshMW said:

Hi, I am new to the forum. I have been trawling through online forums for years now, trying to find other people with similar symptoms, but I think I'm a bit unique.. I guess at this point I just dont want to feel alone anymore.

When I was 15 I started experiencing "head pressure" upon standing. It felt like the opposite of light headedness, maybe an overreactive baroreflex. The sensation would only last maybe 20-30 seconds, but it was very intense and scary at times. I remember dreading when I had to get out of the car in public and hide this horrible sensation that felt like my brain was going to explode. I would hold my breathe until it passed. Excercise helped. Prozac helped (doctors said anxiety). I would deal with this sensation off and on for more than 10 years.

Around age 20 I became passionate about bodybuilding, but eventually gave up because my pulse became uncomfortable in my head during excercise and my heart rate would remain elevated for hours or even days after a big workout.

Around age 27 I experienced a very stressfull time in my life, so I started excercising again. I think the combination of the stress and excercise eventually pushed me over the edge, because my heart rate and blood pressure remained "permanently" elevated for months before the doctor prescribed me beta blockers. I was averaging around 150/80 and resting HR around 90 (my normal is about 55). The beta blockers worked great at first, but gave me terrible nightmares. I would wake several times at night with my heart beating out of my chest. Almost like PTSD style nightmares. I believe I was actually withdrawing from the medication in my sleep, because I had to split my dose throughout the day to avoid a rollercoaster ride. I also became VERY sensitive to the heat in summer (and hot showers).

After about a year the beta blockers started becoming useless. The head pressure was worse than ever and my sleep was killing me. I had one particularly bad night; I could feel my pulse in my face, neck, fingertips, everywhere. I could hear the blood pulsing in my ears while laying in bed. Standing up felt dangerous. The next day I had a mental breakdown and went to the hospital, I didnt want to leave until I was fixed. I was prescribed anti depressents and began ceasing beta blockers.

BB withdrawel was h*** on earth. It was just after my sons 5th birthday. I became completely bed ridden and my father (who lived with us) started taking responsibility for him. I couldnt even sit up at my desk without my heart rate climbing upto almost 200. My systolic pressure would actually fall and my diastolic would increase to over 100, sometimes my pulse pressure was barely 20, it felt like my heart was suffocating. I spent the next year very slowly sitting at my desk for longer and longer, then standing, then walking, then jogging.. but it never went away, everything had to be done patiently and methodically; I had to use a stool in the shower, keep my house freezing cold etc.

My POTS symptoms changed. I feel OK slowly walking around on level ground now, it's only when standing still the blood feels like it's pooling in my legs (itchy), plus I get a vasodilation type pressure/pulse sensation that keeps building up in my neck and head. It makes me anxious and feels worse when I breathe out (exhale). Re-initiating movement again usually gives me an intense rush and a skipped heart beat. Obviously excercise is still very limited.

It's been almost 2 years since BB withdrawel and I am still having relapses. I have just spent the last few weeks in bed and it feels like I am now starting all over again the psychological toll feels immense. I now have more symptoms. Eating now gives me the same sensation as standing, so I lost a lot of weight in bed drinking only juices. Eating has become a 2 hour event, I eat food and then I walk around for ages (bored out of my skull) trying to help circulate my blood. Doing abdominal crunches helps too. It's getting better slowly. I can't get to sleep at night because of the strong pulse in my face when I lay down, especially the left side external carotid artery. I get episodes of explosive pressure deep in my nose, I have to use cold packs and chew on ice. I think my carotid arteries are dilating in response to the decreased flow elsewhere? My tachycardia is actually improving while these other symptoms get worse.

I take magnesium and low dose prozac. I also take tyrosine, it helps me keep up with the demand for catecholamines and prevents me from getting fatigued and stressed out (highly recommend to anyone experiencing fatigue). Beta Blockers do nothing to help anymore, I only have ice water to help when I get an attack. And thats about it.. my future seems very uncertain 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. 

2 hours ago, StayAtHomeMom said:

A nerve conduction study is a slightly painful test where they run electrical current through your nerves to see if there is damage. I have heard it used to check for carpal tunnel syndrome and diabetic Neuropathy. My specialist did it all over to see if I had nerve damage as that can cause POTS. 

If your specialist thinks it is adrenaline causing your symptoms did she do the urine catacholmine test? Have you seen hyperPOTS symptoms? I have seen some types of tick-bourne illnesses can cause POTS but without a test confirming that I would be leary. 

When I first got sick they were diagnosing me with stuff based on symptoms instead of tests. Asthma, allergies, GERD... then give me the medications to try. I had a lot of bad reactions to them. So after my last hospital trip I refused medicine unless they could prove I had something before taking it. 

In my research it seems like BP can pretty much do what it wants depending on the type of POTS you have. The biggest thing is the HR change that sustains as you stand, plus some symptoms to go with it. People with hyperPOTS have BP that rises. Mine stays the same. And I have heard of people that theirs will drop. And it seems like doctors each have a differing opinion if that means you have POTS or not. 

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.

On 4/26/2018 at 12:51 PM, whoami said:

Hello!

Does anyone around here likes to game on PC? If so, which game are you currently playing?

For me, i'm currently playing Ni no kuni II, Black desert online and old school runescape :)!

Hope you're having a light pots / dysautonomia day!,

w

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

1 hour ago, StayAtHomeMom said:

Have you ever had a nerve conduction study done? Seems weird your specialist would try to reverse damage if it isn't actually damaged. 

As an FYI there is no cure. Only symptom management. BUT if you can find your underlying cause and treat that then your POTS may subside. POTS is not a disease of itself only a cluster of symptoms. That is why it is a syndrome. 

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.