hyperpots

Alot of the Hyperadrenergic POTS reading suggests Excercisting to burn off the excess Adrenaline. I used my Treadmill 3 days in a row. I walked a mile the first day, 1.5 miles the 2nd day, and 1.5 miles yesterday. Felt good while I was doing it. I don't feel like I was "Pushing" to complete this. All the while, I've been drinking more and increasing my Salt intake. All **** broke lose today and I don't understand the correlation. All along, I don't have strength issues standing, just Head Symptoms standing. I can walk the Malls usually without problem other than I'm exhausted after I do this, but I've been walking the malls at least 2 x week for a long time. Woke up today with Terrible Anxiety and It's been all day ! I know who I am, but I have super confused all day. Felt like I was being choked in the Neck and could feel severe Blood Flow reduction today in my Head, which sent me into the Emotional Crying stuff. The Adrenaline has been all day.. I've taken Xanax, Benadryl, Percocet... Nothing has helped.... I would have went to the ER if I didn't have my ANS Specialist Appt. I've been waiting for tomorrow. I sure hope I can get some help. I am suffering Beyond Suffering. On top of the Above symptoms, I had several Short of Breath Episodes all day just sitting in my office chair. It's the overstimulation causing the Breathing stuff.. I can tell. Did I crush my Adrenals ? Peeing excessively all day as well while I'm trying to stay Hydrated.... I've read and researched so much... I hope the Meds I'm not on that I need to be on will bring me some relief. Can Anyone Relate to This ? How I can sit here and write this is Beyond Me. Feels like Brain Damage. So, I overdid it Obviously. Some on the Lyme board say I released Toxins from my Lymphatic system and perhaps killed off a big Load of my Lyme from the sweating and increase in body core temp. Alot of theory and no real answers. Steven

Lots of ways to Bring up Dopamine... i.e. Levadopa, L-Tyrosine, Mucuna, etc. Not sure what your taking, but I do know of Neuroscience and they have a great lab.

I had these done a short time ago. Keep in mind the Norepinephine level was taken while I laid flat on my back in a Hospital bed. I wasn't even having a Surge at the time. So, I would think standing, it would be much higher. Strange that my Epinephrine is high in the other labwork, but the Norepi is normal. Again, wasn't having a surge at the time of the blood draw. All of my Neurotransmitters are whacked out. From what I have read, the Antidepressants don't raise the levels, but only reuse what you have. So, there has to be another way to get the levels up. I started taking 5-HTP which is suppose to Raise Serotonin Levels. Not sure how to get Dopamine up. And of course, getting the Epinephrine/Norepi down. Just thought I would share and get your thoughts. Steven

My Lyme Dr. recently gave me some 5mg Percocets for my pain issues. I can tolerate pain more then most people, but thought getting rid of one symptom would help another. At the same time, I didn't want to build addiction or Tolerance, so I decided to start low and stay low. I have been breaking the pills in half so that I take 2.5mg with each dose, which is pretty much spit. I really didn't want to post this in fear of people getting on me about addiction, but it does help, so I'm posting. Percocet is a CNS depressant, but so are many other things I have tried and they don't settle me down like the Percocets do. The problem is that the relief is short lived. I'm thinking of asking the Dr. for Phenobarbital. I think this might help me. My mood gets so much better when my CNS is calm. I'm not looking for the high, although I wouldn't complain about that either. What do you guys make of this ? Also, I am new here and curious if you guys have a Live Chat Room for POTS. Would love some instant support when I need it.. Thanks everyone.. Steven

I'm wondering if anyone uses those things they use in the hospital on the legs to simulate walking to prevent blood clots while your sleeping. The reason I say this is because each and every morning I wake up with so many Head Symptoms in addition to body symptoms. Can someone tell me why I am aching from head to toe, up and down my spine, and inside the brain right out of bed. I'm sleeping soundly, and then I begin to squirm about the bed. I realize I'm clenching at the teeth, but I'm still half asleep or more. I want to keep sleeping, but my head starts killing me in the temples and it feels like the pain is going right through my brain. It's like an Anxiety in the head so bad that I have to just get up and get moving. No choice to sleep in. Otherwise, I sleep like a log before all of this begins. I get up and get a cup of coffee to wake up. As I'm walking around, my feet/ankles are killing me with pain. They are stiff and soar as are my legs and my spine, shoulders, arms, and neck. I don't appear to have any pain in my joints, this is all muscular. I have had POTS now for 4 years, but I have never ached like this. The head stuff is progressively getting worse. Maybe I'll get some answers from the ANS Dr. I see Monday, but curious who else has this. The Morning Anxiety is also a big issue. Lastly, my eyes are killing me and my right eye is drooping out of bed and leaking tears or some other kind of fluid. Not even 2 hours after moving around, my right eye is much better.

Thank you everyone for your replies. Katybug and Bren, I think you guys are 100% correct. I was in a bad Adrenaline Crisis for the last week and all that Crying has been going on daily. I'm seeing an ANS specialist on Monday and hope to get on the correct treatment. After tons and tons of reading today, I realized that I was just sitting in my office chair doing nothing, as in not getting exercise. I also had not been hydrating myself correctly. I took 2gm of Sea Salt, drank 2 Liters of Water and Walked a Mile on my treadmill. The treadmill was tough, but when I got off, they Crying was GONE, my mood came back a good bit and I was able to take my Kids out to dinner. Even more, I was reading about the Cerebral Hypoperfusion and shunting of Blood away from the brain and I think that Shunting in itself can actually cause many of the Symptoms that I have always associated with "Head Symptoms" and Lyme die off as well. I know I do have Lyme and it's causing all of this, but I also know that I have to get the Hyper POTS and most probably MCAD under control before I can really go after the Lyme effectively. BellaMia, just a quick comment to your post. The Crying and Laughter you talk about is known as the "Pseudo Bulbar Affect". If you look it up, again, you will see it has to do with Injury to the brain, which in our case can be the Shunting of blood away from the brain. Lots more to research on my end so I can understand and get on the proper medications. Thanks to all, Steven

My 3rd post here in two days. So glad I found this forum and thanks to everyone that has written to me. I did a search and couldn't find this, so I"m putting it out there. I am having Emotional Lability up the Wazoo. I've been sick a few years with all of this now, no progress, no light at the end of the tunnel, lots of Hospitalizations, ignorant Dr.'s, etc. I see an ANS on Monday for a 3hr appt. I have everything to take him, including my Tilt test, Ansar test, tons of labs showing high Norepi, etc. So, my Emotions have been running wild and I can't seem to get them under control. I am crying at things like someone died. It's not a little sob, it's all out crying, several times per day. I gets real bad right out of bed, while I'm trying to catch my breath, deal with the chest pains, freezing cold, head pains, etc. To me, it feels like chemicals are all whacked out in the brain. If I didn't feel the decrease in blood flow in the Brain, I'd say I am truly depressed and need Electro Convulsive Therapy. Heck, maybe I should look into this anyway. Would probably make me worse with my luck. The only thing that settles me down is Benadryl and Percocet. Even then, I'm struggling, but I'm not crying all over the place, or at least not as much. My kids see me like this and I think I'm scaring them, and thats the last thing I would ever want to do. I'm raising them by myself and they are both around 10 years old. They have been great support to me as I explain to them as best as I can what it going on and that all of this is caused by inadequate blood flow to the brain and chemicals out of whack. So, the 10,000 question. Is this Normal ? And what do you do about it ? I have alot of issues, alot of losses, but nothing that I couldn't deal with if I didn't have this condition. Who else has this ? Will the ANS Dr. be able to help me with this ? Steven

Is this how many people here live ? Do they just sit and try not to move ? I havn't been to active b/c of Malaise from the Lyme, but I have never had mobility issues and these types of rushes that are so severe. I can't imagine that this will be the rest of my life, just sitting, meditating ? What do you do when you have kids ? I'm gonna need a full time shrink.. Very Overwhelmed if it's not evident.......

I'm reading that SNRI's are a better choice then SSRI's for Hyerp Pots. Is this true or a personal experience ? Thanks for the quick response...

I just want to reiterate, I had a pos. Tilt Table Test a while back. It was never determined that I had Hyperadrenergic Pots until recently. However the Dr. suggested Florienf, Midrinone, which really arn't used for this form of POTS. Without making this too long, I tried a few things last night. I took 0.2mg of Catapress, 150mg of Zantac, and and H1 Blocker. I slept great, even woke up better then I have in a long time. When I got up, about 2 hours later, I started getting the Surges again. I had already taken another 0.2mg of Catapress and another 150mg of Zantac, plus my a.m. Klonopin of 1mg. I was feeling very sedated in the head while this was going on and I'm like What the Heck is going on ? I went onto my treadmill and walked for 25min. at a mod pace to try and burn up some of this. I felt horrible the entire time I was walking, but want to implement exercise into my treatment. I came upstairs, sat down and cooled off, and the Adrenaline Surges started again. At this point, I decided to take 20mg of Propanolol, which I had from the same Dr. originally, but had never taken any of these meds. So, I felt some relief about 20 min. later, but 20 min. after that, the surges started again. My Blood pressure is just fine and my heart rate is beautiful at 75 Resting and about 90 standing. Havn't seen numbers like this in a long time. So, on one hand, it appears I'm blocking the Adrenaline if you look at the numbers, but what I'm feeling in my chest shooting down into my stomach is consistent with the Adrenaline. I can't fathem that this could be anything else. I'm not trying to treat myself, but I do have a strong medical background and I'm careful with what I'm doing and watching my HR and BP by machine to make sure I go slow. I'm only doing this because I am in such agony with these Rushes. If I go to an ER, they will shoot me up with 4-5mg of Ativan which does nothing, so please don't jump on me. I obviously need help and have my 3 hr ANS appt. on Monday. Just trying to survive until then. Can any of you relate to any of this ? Please tell me what else could be causing this ? My Plasma NE was 406, but that was laying down in a hospital bed. I'm sure it's much much higher standing, but I'm even getting the Rushes while just sitting in a chair and the only time I feel proper blood flow to the brain is when I am 100% flat in bed. This is rediculous. Steven

I had someone PM me and they told me how my symptoms were exactly the same as theirs. I have so many meds here b/c I've seen so many Dr.'s, but none of them have gotten the right combo. So, going from being on nothing, I took 0.2mg of Clonidine last night before bed plus 50mg of Benadryl + Zantac 150mg. I slept pretty good. Still woke up with the Jaw clenching and some weird stuff in the head, but overall, a bit better, or not as bad, hard to figure out which way to say it. Got up and took another Zantac and Clonidine 0.1mg. The stuff is sedating. Hard to sedate me too, so it must be working on something. I was reading on how when upright, we can get Cerebral Decrease in Bloodflow. It sounds exactly like what I have been feeling. Perhaps this is why I feel off balance when I stand still, but not when I walk. Even the G force of driving gets rid of it, but I feel it at a red light.. Standing still and sitting Erect are no good for me. Now my legs are feeling real weak like I have MS or something. It's always something. Now I'm wondering if I need exercise or if this is yet another symptom. I have been doing alot of sitting around lately. ? ?? who knows.... Def. not as bad today.. I'm seeing ANS Specialist on Monday.. Forgot if I put this in Original post. Hopefully, he can help me. Thanks for your posts everyone.. Steven~

Thank you everyone so far. Appreciate the responses. Naomi, Levaquin is one of many drugs used to kill off Lyme disease. If your symptoms didn't start until after you were on this, then perhaps the Levaquin was like a bat and you hit the "Hornets Nest" so to speak. Levaquin as I know it does not make a person cry. I defiantly have Lyme. I have positive Bands on the Western Blot plus I have a Positive PCR for a parasite called Babesia. Lyme Dr.. also thinks I have Bartonella. The Herbs I have been on target all 3 infections and everything I wrote above has exacerbated since being on these Herbs. I am in a holding pattern right now with the Herbs hoping what I am feeling is a die off (Toxin) reaction and I'm hoping it will subside as the days pass. Right now, I'm on my 5th day holding and NOTHING is subsiding. Very scared !

Having trouble just writing this everyone. Perhaps you can give me some insight why I feel like I'm dying :-( . I was told I had Lyme disease a few years ago and have been trying to treat it without success for like 3 years now. All the while I was also told I had POTS, but I guess its Autonomic Dysfunction as well b/c I'm having so many issues and I don't understand what is going on. Please tell me if any of you can relate to what I am about to write b/c otherwise I think I am losing my mind and even still, I'm scared to death. Ok, so I sleep pretty soundly, but then around 7a.m., I start squirmming all over my bed. I feel weird stuff in my head, but lately it is in my neck. My neck gets real stiff and before I'm even awake, I just lay there dreading getting up, but know that I can no longer sleep. I start feeling the Adrenaline going before I even change positions. My HR laying down is 85-115. It weird how it changes up on me. When I stand up, my HR goes anywhere from 125 to 170. If I lift anything over 10 pounds, the HR of 170 is a given. I don't get too short of breath until I actually sit down, which at that point, my HR really starts going before it comes down. Almost like a reverse POTS. So, even seated, I can feel these Adrenaline rushes going down my chest and into my stomach. I have been stuck in my office chair for over a week now because of all of this during the day. I alternate between being freezing cold and needing a ceramic heater blowing on me to sweating terribly, need a cool fan blowing on me. I have tried to take Xanax, but it does nothing but make me sleepy in the head. My body keeps going. I have found that Low dose nacrcotics and Benadryl seem to help take the edge off of things, but not enough for me to get out and live a little. So, here is the real kicker. I can't handle any stress at all. Before I got sick with this. I was in charge of others at my workplace and if you threw stress at me, I could shrug it off like a fly. Now, the slightest bit of stresss and all of the above symptoms exacerbate, but what is really getting me now is that I am crying for NO reason multiple times per day. This is not a weepy cry, but an all out Cry like someone died. It can go on for a good while. I try and pull myself together, but back it comes so many times per day. Sometimes, I just look at one of my kids and that can be the trigger. All the while I'm doing this, I'm asking myself why and where is this coming from. It is 100% overkill. So now, yet another symptom: When I stand up my right eyelid is drooping and my eye feels like it's swelling. I can't see any swelling, but I'm getting a thick liquid discharge from it. Again, this only happens when I stand up. I have so many other symptoms that come and go like nausea, shortness of breath at rest sitting in a chair, body aches, malaise and more... I have put all of this Lyme treatment on hold and hope some of this calms down. I have seen so many Dr.'s. I did not pass out during the Tilt Table test and I made them turn off the Isoproteronol b/c I felt like my heart was going to jump out of my chest and my blood pressure was holding find. It doesn't go crazy high or low. When I stand up, my blood pressure is like 120/70 or so, when I'm laying down, it's like 105/70. I've been to the ER like 20 or more times and they keep sending me home after labs and Cat Scans come back normal. I am seeing a specialist with Dysautonomia and POTS on Monday finally after waiting 6 mos. for this appointment. I hope I can get some answer and some relief from some of this. Lastly, I recently had a CCSVI procedure of the Jugular veins in my neck b/c I had them checked and they were sig. narrowed. I'm not sure if this could be a problem of them closing up again or not. I'm not on any medications for the POTS. From what I've read, meds like Florinef, Midrinone are not for me b/c of the Hyperadrenergic POTS I'm having. I had Catecholamines checked and laying down my Norepinephrine was 406, but from what I've read, it's the standing levels that go up to 600 or more and correlate with Pheocryocytoma like symptoms. So, the Cardiologists I have seen havn't picked up on this and have tried to push these medications on me that I know are wrong. It appears I need something like Clonidine and an Antidepressant that deals with Norepinephrine. I'm new here and heard of this site from another friend. Sorry to post so much on my first ever post here, but I'm really lost and scared. Thanks to whoever can give me some support that at least I'm not alone. If some of this sounds crazy to you, please tell me. I know in my heart that this is all real and I have no Psychiatric history. I will say, my Anxiety is going through the roof between the symptoms and me just being scared. Steven