hyperpots

A Dr. gave me the Clonidine a while back. It made me so sedated, even at the low dose. Thought I'd try it again given the high Epinephrine. It's not working... ! Making me sleepy in the head. BP is ok as is my Heart Rate, but there is this disconnect between my head and my body. I'm laying in bed and feel so sleepy, yet I'm squirming all over the bed, can't sit still. So uncomfortable. I've been taking 5-htp and L-Tyrosine too to try and get the other numbers up. Not sure why the Dr. ordered this test as there were no suggestions given to me. None of my Dr.'s know how to treat me. What choice do I have ? Even my Lyme Dr. is lost with my symptoms.

My Values below from testing, so a few things are happening. Probably the cause of my POTS, Sympathetic Overdrive (Constant), Immune Suppression bringing out the Lyme, Babesia, etc. Would account why I'm not Orthostatic, but I'm not hypertensive either, which is strange. Would appreciate if you guys look at entire post and give me your opinions. Epinephrine Also known as adrenaline, epinephrine is a hormone and neurotransmitter transferred by the nervous system that creates a fight-or-flight response in the body. Present naturally in the adrenal glands, epinephrine raises the heart rate, constricts blood vessels, dilates pupils and suppresses the immune system. Norepinephrine Norepinephrine is a neurotransmitter and hormone that also is part of the fight-or-flight response in the body. When norepinephrine is released in the body, it raises the heart rate, which causes glucose to be released as energy and blood to flow to the muscles. http://www.ehow.com/about_5380460_epinephrine-vs-norepinephrine.html I have Clonidine here 0.1mg Tablets. Took 1 tab before bed last night and although I still feel sick, my head wasn't as crazy out of bed this morning. BP was 102/70 HR 73 sitting, and 106/84 HR 83 standing. I still feel overstimulated, but a bit more tolerable. So, I just took another 0.1mg of Clonidine and will see how the rest of my day goes. If I can get this under control, perhaps the immune system can come back and deal with my Lyme infections, just a theory, but would seem to make sense. Clonidine is a centrally-acting α-adrenergic receptor agonist with more affinity for α2 than α1. It selectively stimulates receptors in the brain that monitor catecholamine levels in the blood. These receptors close a negative feedback loop that begins with descending sympathetic nerves from the brain that control the production of catecholamines (epinephrine, also known as adrenaline, and norepinephrine) in the adrenal medulla. By fooling the brain into believing that catecholamine levels are higher than they really are, clonidine causes the brain to reduce its signals to the adrenal medulla, which in turn lowers catecholamine production and blood levels. The result is a lowered heart rate and blood pressure, with side effects of dry mouth and fatigue. If clonidine is suddenly withdrawn the sympathetic nervous system will revert to producing high levels of epinephrine and norepinephrine, higher even than before treatment, causing rebound hypertension. Rebound hypertension can be avoided by slowly withdrawing treatment.

Dani, what do you do about it ?

Can anyone relate to this ? I swear by the Bible I've noticed I can be sitting in a chair with my feet up or just laying in bed and I will literally sit and burst into tears for no forsaken reason. I feel this weird Sensation over my Forehead, the one you get sometime right before you do cry for a reason. All I have to do is get up and walk around and that sensation goes away. I'm by no means jumping for joy or laughing out loud, but at least it holds back the Severe Depression feeling. How can this be ? Some have suggested this Hyperadrenergic POTS. No sure if I have it. The specialist I saw wasn't interested in it when I brought it up. My blood pressure doesn't go sky high while I'm up, but it stays above 100 Systolic. I'm no BP meds too. I don't always feel the gushing adrenaline while up, but I often do. Bottom line, I could walk miles, but my problem is I get fatigued easy. Take today for example: I was feeling like death, needed groceries and had to go to the store. While walking around the store, I begin to pucker up. I can smile at things. Not great, but 50x better then home sitting upright in a chair. Also 50x better then laying down. I have another problem that I'm wondering if any of you can relate to: I wake up all crazy each and every morning. Before I'm even awake, my head starts killing me. If I turn over in bed, the pain shifts to the other side. It gets so bad, I get up and walk around and it all eases up. Same problem, I can't keep walking, so I come to my office chair. As I sit in my chair, I feel my right eyelid drooping. It's the craziest feeling and my right eye goes blurry. Obviously this is all circulation problems, I just don't understand any of it ... What to do ? Steven

I've been pretty sick folks and havn't posted anything in a good while. My Cardio suggested to see this Osteopath and he gets people Dysautonomia/POTS better. Anyone know anything about this ? Steve

God forbid I take a medication without side effects. I started Mestinon last night and I have had terrible Nausea. I get some extreme cramping every so often and a few episodes of Diarrhea. My gut has never given me a problem until now. I don't feel like I'm having a heart attack today and my breathing is much better. My HR standing last night actually was hanging around 100, which I havn't seen in forever. I started on 30mg, but felt like I needed more, so up to 45mg today 3x / day. I still needed a Xanax, but no where near the stimulation I've been feeling. I have Phenergan here, but I'm already sleepy and just trying to ride it out. Any thoughts ? Steven

I can't believe how the Midodrine sent my CNS into overdrive like it did. Still suffering all day today even off of it now x 24 hours with relentless Adrenaline Surges through my chest/stomach. I have been literally gasping for air for days now. It all starts when the sun enters my room in the morning before I'm even awake. I took a 25mg Coreg (b-blocker) today and it didn't touch my HR. My supine BP came down to like 100/70, but when I stood up, I was right back to 120/80. In other words, it didn't do much and 25mg is a pretty hefty dose of Coreg. It's suppose to be central acting. Last night, the eye that droops on me went very Blurry, yet my good eye was perfect. I could see people and their faces, but it was almost like blood supply was cut off to that eye. Very similar to what happens with Benadryl, but I didn't have any. I've emailed back and forth with Dr. He finally says to Hold the Midodrine, which I've been doing as it's obviously the wrong drug for me. He agreed to call in the Mestonin and it would be nice if someone could tell me if they think this will help settle me down since NOTHING I have tried, again Benzos, Narcotics, etc. do nothing more then sedate my head. It's like there is this big Disconnect between my head and Peripheral body. I hope the side effects don't affect me like the Midodrine did. Hard to belive even with it out of me, it appears to be still having some kind of effect on me. I have had to lay in front of my fireplace to try and stay warm since I started that medication. Instead of giving me energy, I was fatigued the entire time on it. A Paradoxical reaction they call that. I get jacked up from a 5mg Lexapro too. I'm a little scared to take this med, but if it will settle me down, I'm all over it. Thanks in advance as always.. Still hanging on to that thread.. Oh yeah, Dr. says in email to make appointment in Vanderbilt. I guess he is stumped by my symptoms. Wonderful huh ? Trying to figure out how I will get to TN which is 2,000 miles away I think. Steven

Lieze, Yes I do get this in the chest, but also in the stomach. If I take Xanax or the like, I get sedated in the head, but it does NOTHING for the Anxiety or Breathing Stuff.. I think the crying stuff come on b/c I am just so uncomfortable. These are not acute attacks. They last all day. I have also had these in the past off of the Midodrine when I was on Antibiotics to treat my Lyme. Makes me wonder what is what. With the Antibiotics, I'm killing bad bacteria and the so called "Toxins" I'm told are causing the terrible Anxiety. With the Autonomic Dysfunction, it would have to be the Drug itself. When I get these symptoms and not treating anything, it's usually the result of stress, which can be something like being short on funds. I really need to get this under control. I don't know how else I can communicate this to my Dr. than what I've already told him and balled my eyes out to him to help me. He apparently thinks in the long run, the Midodrine will help me and those that have bailed from the drug, didn't give it a chance b/c of the bad side effects. Again, I'm lost and only guessing. I do know that my quality of life has dropped to Zero Steven

Trying to figure out how I"m suppose to do this. I can only get him by email. I typed a bunch of stuff like I was getting flu like symptoms on it as well. I'm dosing 2.5mg 2 x day now. The Shortness of breath hits almost immediately after taking the a.m. dose I am freezing cold and Nauseated too. The crying is ridiculous and I feel I have no control over it. I call it being tortured now daily with these symptoms. He says continue for a week and we will re-evaluate in his email. When I asked if any of this is normal, his reply was simply, "Yes". Again, not sure how I'm gonna do this.. I'm as tough as nails and some wimp, so when I complain, you know it bad if you know me. Steven

Sorry everyone, I don't mean to be a complainer, but I literally have felt like I'm Having a Heart Attack for every waking Hour today. On top of that, I was trying to get my breath all day long. I took Xanax, B-Blocker, Percocet, Benadryl and NOTHING will bring me down. I get tired in the head, but my body keeps going. I've been hopitalized 5 times before the POTS / Dysautonomia with cathethers fed up into my brain, at least 10 MRI's, Head CT's, Enough bloodwork to test everything on this earth. Even when I had a minor procedure, I required 5 x the amount of sedation that a Normal Person gets. There must be something that will settle down my system. Even a 5mg Lexapro will ramp up my CNS and cause the above symptoms. What am I suppose to do ? I expressed to my Dr. that it's bad enough being totally disabled with all of this, but I emphasized how I needed RELIEF from symptoms. I was smiling, still feeling sick, but my CNS wasn't going as crazy before taking the Midodrine Yesterday and today. I was suppose to get Mestonin, which I thought would settle me down, but the Dr. didn't want to start 2 meds at once. So, he didn't call me back, but he emailed me back and told me to cut dose to 2.5mg 2 x day, which is what I did today, but Yesterday was 5mg and I got 3 doses at 5mg. The ER will spit me right out and tell me to Live with it ! I know this from at least 50 ER visits. If anyone has some advice, I would sure like to hear it. I'm a 40 y.o Divorced Male trying to raise my 2 kids by myself. They are in 4th and 5th grade. I could sure use some phone support if anyone is willing to talk to me. You would think someone close to me just died the way my mood is right now and has been all day. My Nanny is spooked, but she heard alot of what the Dr. said and feels helpless. I don't want to lean too hard on her as she is very young. Sorry again to complain... Steven

Not on Florinef ! I just took my 2nd 2.5mg along with a Beta Blocker he said to try. Was trying to see if I could do this without the Beta Blockers as in the past they have only controlled HR and did nothing for the Anxiety. I honestly believe in my case, the Anxiety triggers my shortness of breath. It's that intense that I think everything gets dysregulated. I know when I'm not so revved up, my breathing is fine. I wouldn't think the 5mg I took 3 times yesterday would still be causing symptoms today since you have to take it so often, but I havn't woken up so terrible in the longest time. I put a call into the Dr., but I already know what he will say. He will tell me to reduce the dose or stop the drug entirely. Either way, he is so busy that I doubt I will hear back from him. Steven

Forgot to mention, my Anxiety is going through the roof all morning......... urghhhh Steven

Those goose bumps and hair standing on edge really went bezerk last night. I was feeling surges of this like 3 x a minute. I figured since I'm suppose to take it every 3 hours, it would be out of me in the morning and I'll just back off to 2.5mg instead of 5mg. Forgot to mention, my heart felt like it was gonna pop through my chest right before I went to bed. Then I got nauseated and just dry heaved over my toilet. I have terrible anxiety from this, but never have felt any of this. So, this morning I got up and took 2.5mg instead of the 5mg. I have been ice cold freezing ever since. Feeling sedated as well. I usually can't go back to sleep once I'm up, but I had to at least lay in bed b/c I was so cold. I fell asleep, but have been shaking from being cold in my sleep. Phone rang and I'm up now and feel all disoriented probably from going back to sleep. Dr. is not available and time for my next pill. Don't know what to do. The 5mg was def. way too much. BP and HR are ok for me. Any advice or suggestions ? Steven

I can't say these goose bumps, hair standing sensation on the scalp is discomforting, but it sure does feel weird as if something is going on. I hope in my case, my blood flow is increasing in the Brain. I'm sure in my case that decreased Cerebral Blood flow is a big source of my symptoms. Lots of reversal needed as so much time has passed trying to figure out what was wrong with me. Anxiety is def. not what is normally is. Breathing is not Labored, nor do I feel overstimulated. Things do calm for me at night, but I don't remember having this type of calm recently. Will update tomorrow. Thanks everyone so far........ Steven

This is officially my first treatment for my POTS / Dysautonomia. I feel my hair standing on end on my scalp just 30 min. after my first dose. Otherwise I don't feel anything too much different except that maybe my anxiety may be slightly down. Dr. added a very low dose B-blocker, but won't start that until tomorrow. It's called Betsxalol and the dose is 5mg every morning. He said to give this 3 weeks and then might add in the Mestinon and perhaps an SSRI. I tried a 5mg Lexapro I had sitting around the last few days and it was just too stimulating and made my anxiety worse when I thought it couldn't get any worse. Lastly, the Dr. wants me swimming Laps M-F, so I'm joining the YMCA. He says this is a great way to get exercise keeping the body cool at the same time and getting the legs to learn to keep the blood flowing from the legs back to the head. Wondering if this feeling of my hair standing on end is a good sign that Perfusion is hitting the brain. Appreciate your thoughts as always, Steven