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hyperpots

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Everything posted by hyperpots

  1. 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.
  2. 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.
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. Forgot to mention, my Anxiety is going through the roof all morning......... urghhhh Steven
  12. 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
  13. 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
  14. 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
  15. I will discuss this with Dr. tomorrow, but I just don't understand why my symptoms are so severe while laying down with the Vitals I put in the post. If I get up, HR shoots to 140 and symptoms actually better while up and walking around, but I don't have the energy to keep walking. BP goes up for a few minutes, then goes down to like 108/90 while standing. Just last minute checking before I f/u with ANS DR. who is putting me on Midodrine and Minostin tomorrow. Steven
  16. Thank you everyone. You are all 100% correct about reading and looking for so many answer re: the meds before I even take them. This Anxiety that I have is relentless. I clench my teeth so hard at night, I sleep great it seems, but I never wake refreshed. My Anxiety is going full throttle before I open my eyes. Must have something to do with Cortisol being high in the a.m., but I can do Nothing and have been paralyzed for a few years now as no Psychiatrist could help me, nor could they tell me what was wrong with me. The weird part was that I didn't have head symptoms or POTS in the beginning, just plugged into an electrical outlet sensation. Tomorrow is D-day, so I will try and just try and Relax even though that word left my vocabulary when all of this started. Thank you everyone again thus far for all of your support... Might need some new teeth when this is all over or calmed down... Dentist says he has never seen teeth ground down like mine are. Steven
  17. Starting both meds on Tuesday. Not sure of the dosing yet until I meet with Dr. I know I have Parasympathetic excess from previous testing. Hard to believe these meds would get take care of the way my head feels all swollen and positional neuro stuff. The way I understand it, the Mestinon will bring down the Parasympathetic and the Sympathetic will follow. The Midronine will restore better blood flow all around including the Brain. Just scared b/c I see so many here already on these meds and no better. Beta blocker slow my Heart Rate, but don't touch this anxiety, nor do Benzo meds like Xanax, Ativan, etc. I so hope these meds bring me some relief. Dr. says relief can come quick in 1-3 days. This would be a miracle.... Sorry, just having OCD type behavior as Tuesday is nearing and it's "Judgement Day" for me kind of. Steven
  18. Don't get me wrong, I feel terrible lately every second of every day, but I have noticed when I walk, my Anxiety and some other symptoms, even the stuff in the head gets better or not as bad is the better way to put it. If I just sit in a chair with my feet up or even just sitting up or even laying down, my symptoms seem worse. It makes no sense ! If I just stand up and don't move, then tons of symptoms get worse. I'm so lost in all of this. Dr. will start me on Midodrine and Mestonin and an SSRI this week, Tuesday. Hope he has it right. Steven
  19. Did a search and can't find anyone saying this. I feel like my case is so similar to some of you, yet so different. Not sure why this happens to me, but I wake up feeling like my Head/Face are swollen. My right eye is drooping half shut out of bed, but the rest of my face looks swollen too. Of course this is all after 8 hours of sleep. I also get this anxiety is my head between the eys "3rd Eye" some call it or "God Spot". I feel that while I'm sleeping and lots and lots of morning anxiety while I am sleeping.. Makes no Sense to me. Anxiety should be while your awake ! There is no panic with what I feel, but lots and lots of off the wall anxiety. So, I wake up and start crying like a child. It's like the crying one would do if they had a stroke or maybe it's just total despair b/c I wake this way each and every single day for 2 years now. Get up and take 1mg Klonopin, 2.5mg Percocet for body aches, 25mg Liquid Benadryl as this seems to help settle me down. I know I'm clenching my Jaw all night while I sleep. I wake up and try and relax it and go back to sleep. So, after I'm awake for about an hour, things settle down, but I still feel like Garbage. This new Dr. who is putting me on Mestonin and Midodrine on Tuesday claims I might be near 100% better 3 days after taking the meds. Problem is I have to wait for Tuesday for Prescriptions. I'm a bit lost. I know he need the Tilt Table test, which I did on Thursday, to give me the right dosages of the meds. But, he saw how much agony I was in and to make me wait almost a full week to start meds which he claims will get rid of all of this is like dangling candy in front of a child. Just the way I see it, but I also know he is busy and this is how medicine works. So you all know, I'm not trying to complain or looking for pitty, but I am being tortured by these sympotms now for a very long time. I look forward to going to bed from the time I wake up. I'm taking this and that all day, every day just to make it through the day. I want to be well and be able to do things with my kids. They are still young, but both getting ready to hit puberty and I look back and realize I havn't been able to do any of the things I have wanted to do with them for a good while now. They deserve such a better life. My X ran out before I got sick and has her own problems, so it's just me and my kids. So, I'll finish with this question. Is it possible the blood is pooling in my Head/Face/Brain while I sleep to wake up like this ? Every lab is out of whack.. Testosterone, DHEA, Aldosterone, etc. Ran a Neurotransmitter panel and Dopamine and Seratonin are very low, Norepi is high... Not shocked from the way I feel. Thanks for all the support, Steven
  20. F/U today with ANS Dr. Had Echo on first visit laying and standing plus some other physical findings. Shows Venous Pooling of blood from Head to Toe. Had Tilt table with Isoproterinol 2 years ago, when I was told I had POTS and put on B-Blockers, but they didn't help. Today, had repeat Tilt to see where I am now. Didn't get interpretation, but had the 30+ beats without any meds, guess it's a "Dry Tilt" Test. I know my resting HR was 80's and I went to 130 while up. BP hung in around 110 over 80-90. So Mean Arterial Pressure is low. Not sure what that means. Didn't pass out, but all Symptoms exacerbated during test. For me I have severe Sypathetic activity causing: Shortness of breath, chest pain, bad nausea, pupil dilation, diaphoresis, fatigue, Anxiety and Adrenaline rushes, I feel off Balance, Head Pains, and more. My Head symptoms are far worse to me then anything even though all are bad. I swear it feels like Brain Damage ! But I know it's just Hypoperfusion as Symptoms change when body position changes. Really weird that if I'm up walking around, things lessen, but if I'm standing still, everything goes nuts. Sooooooooooooo Dr. Says Mestinon will help with Parasympathetic excess and bring down Sympathetic response. Says Midrinone will get my blood pumping the way it should be and help the pooling and Hypoperfusion stuff in the brain. Lastly, he is considering an Antidepressant. He wanted to look at everything and even wants one more breathing test to measure more of the ANS, but says he will do this shortly down the road. Wanted the weekend to figure out dosages, and my F/U is next Tuesday and then I get the Prescriptions. He is confident these two meds alone might be all I need with some tinkering of dosages. For me, it's like a guy in Pain for 5 years and a Dr. sitting with a Demerol Syringe, but says I'll give it to you next week. So, I have to continue with the pain for 5 more days. In the big picture, it's not long, but what I deal with daily is beyond ridiculous. I can't imagine having my Life Back the way it was, and this is what he is saying I will get. I'm excited and scared to death at the same time b/c he might be wrong. So, my pathetic posts continue for now and wondering if Anyone has been on this Combo. I am on Nothing for my symptoms and have been treating them all of this time thinking they were Lyme symptoms. He says Lyme may have been the culprit, but certainly not causing my symptoms. Ok, I'll stop typing and wait for feedback. Thank you everyone for helping me. Great group of people here :-) Steven
  21. Google Bartonella, then click on images. Sounds like one of the common co-infections of Lyme. aka "Cat Scratch Fever". Check it out. You might not be as crazy as you think ! Steven
  22. The other drug he said to use that I could not remember the name of is on the dinet link you gave me: It is Mestonin I have been told that I have Parasympathetic excess driving up my Sympathetic from an ANS test I had. I hear you that we all have OI, he just could not tell me the name of my specific type as of Yesterday.. I will seek clarification on my f/u Thursday visit. He said he would use Mestonin and Midridone combination to clarify !! Can you add your thoughts now that I know the name of the second drug. Steven
  23. MomtoGiulana, Please don't get me wrong on the Beta Blocker. He was talking about the use of it as it pertains to my case. I asked if my case was Hyperadrenergic Pots. I took him labs showing excess levels of Norepinephrine, yet my Blood pressure goes up on Standing to about 150/90, but then returns to say 110/90. Laying down, I may be 120/80. So, I'm pumping out tons of Adrenaline, but not having the Blood Pressure expected response. This is why he is not sure what type of POTS it is. I already had a pos. Tilt Table 2 years ago that I took him that was done with Isoproterinol. I didn't pass out, but my heart rate went nut to 190. My resting HR can be 70-110 right now and I always get the 30 point bump or higher on standing... I just don't pass out. It is an Orthostatic Intolarance form of POTS. He says he has seen this presentation many times and it is one of the easiest to treat, yet people present with the most severe type of symptoms. Best I can do for now, Steven
  24. Not sure if my POTS is hyperadrenergic or not. Dr. wants to do more testing. He had me hold one arm up and the other by my side for a minute. I brought both hands together and one was pale white, the other dark red full of blood. It took about 3 min. or so for them to = again in color. Dr. says this is whats happening in my entire body, even the brain. Says my body thinks I'm having a heart attack all the time, thus the constant Adrenaline which is a Psysiological anxiety and even the Shortness of breath, and get this, even the crying, which I have said all along feels like a Symptom. Says he has seen this before and a combination of a few drugs will make me feel normal in as little as 3 days. Is this possible ????? The drug will be Midridone and another I can't remember the name of. He says I need to get my blood pressure up and that in a years time, I could wean off the meds and no longer need them. Says, my Lyme may have caused this initially, but is not causing my crazy symptoms that I have so long associated with the Lyme and Co-infections. Says B-blockers make the condition worse b/c although they lower the Heart Rate, they also lower BP, which is counterproductive. Says the high HR is the bodys way to try and compensate for the pooling of the blood. He wants to repeat another Tilt test without Isoproterinol and then some breathing test. Then I can start the meds. Great news if this is true, but I have to wait a week to start meds, b/c dosing is based on these other tests, so I'm sick about waiting to start them. Someone please tell me the constant Heart Attack feeling, Shortness of Breath, Crying jags, Malaise, Fatigue, body aches, drooping eyelids, etc. can be fixed by simple meds and in the short amount of time he is talking about. This would a miracle for me and my kids. So, before I left, I asked, is this Hyperadrenergic POTS. He said, lets wait and see what to call it after the Tilt test, despite having a pos. Tilt test already. I'm still a little lost b/c I don't pass out when I stand up, just lots of tachycardia and feel like I'm gonna fall over b/c my balance in my head goes way off. Appreciate your comments. Steven
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