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Everything posted by Pokey

  1. Getting the script was a challenge, as my cardiologist didn't have the secure RX pad necessary for this level of controlled substance. (Cardiologists don't typically prescribe this type of med, obviously.) But it worked out. All is still well, though it is disturbing my sleep some. I am astonished that something so energizing has no effect on my pulse. However, it can cause a little anxiety, at least for me. I am still figuring out the dosing. Take care and good luck.
  2. At least the hair strands aren't compromising the finely honed sense of humor. Nicely done. I see my cardiologist st Stanford about every 5 months; otherwise I see a doctor that specializes in CFS, FMS, chronic pain, dysautonomias. Not sure that he knows as much as I do about POTS at this point, but he's smart and open minded, and willing to experiment with meds as long as I bring studies that logically support the use. My top-rated local endo and cardio were both useless. Incidentally, POTS causes the manifestation of the same symptoms as anxiety, physically. Plenty of studies on that one. There are also some similarities with ADD, when one suffers from cerebral hypoperfusion. (This responds to a post above.) Hope the new doc works for you, and keep up the comedy.
  3. In the meantime I'll give a trial of no Flexeril....and cont. follow up with my primary care doc tomorrow and my pain guy. I feel anxious as regards this...........like -- should I see a Mayo cardiologist rather than a dysautomia specialist? Does anyone know what Dr. Goodman does at a new appt.? Will he diagnose dysautomia by ordering tests to prove thus? Such as tilt table etc..... Or will my blood pressure issues, and tachycardia being the norm for me -- be enough for him to make suggestions? Sorry you are having such a rough go of it. I understand. Note, Flexeril makes me tachy. I didn't mean to suggest that it has a favorable impact autonomically. Perhaps for some, as does Elavil, a tricyclic antidepressant. Hang in there.
  4. No, it's just that your pain can increase your HR and BP, as you suggest. Controlling it is important, as you also suggest. Drugs that I know have an impact on the autonomic system are Flexeril and Tramadol, as they affect serotonin and norepinephrine. I have first hand experience. When my pain is better controlled, my BP tends to be less labile. If I were you, I would be insisting on meds to get that BP down and would keep looking until I found a doctor that would work with me. It's sounds like you feel similarly. Hang in there.
  5. As I am sure you know, pain sends your BP way up. That's part of my problem -- chronic pain.
  6. FWIW, I've tried most of the mainstream things. Anything else that made my hear rate drop made me feel crappy. Most of us have sleep issues (which I partly attribute to alpha intrustons -- HR spikes -- during sleep movement) and beta blockers and clonidine reduce melatonin production, making it more difficult to fall asleep. One of the additional benefits for the stims for me is that come late at night, I get pooped from the stim wearing out. The only downside is that when I come off my initially instant-release dose, I feel a little low; then I take another small dose. The XR could resolve that, but I am always concerned with sleep interference, and would rather take small doses over the day. After a 3-day trial, I have no doubt this is for real. Hang in there. I'll keep you posted.
  7. I went through this game for a while, but mine was very blurry vision -- so blurry I couldn't see. The optometrist confirmed something was wrong, but then the big wig neuro ophthalmologist (who spent no time with me) with a team of interns, said there was nothing wrong, and the my GIANT pupils were not so large to be statistically significant. Statistically significant for what??? I still can't see clearly, no matter. POTS wreaks havoc on my vision, and when I have migraines, it's even worse. If only we had integrated care, where the POTS doctor spoke with the ophthalmologist. So my hear goes out to you.
  8. fwiw, the stimulant is dropping my HR. hang in there.
  9. Hey Pokey, Interesting stuff. The medical literature I've read seems contradictory. I know the stimulants cause an increase in neurotransmitters, like dopamine & norepinepherine. Norepinepherine, in particular, usually causes the HR & BP increases that you describe. But that rise in BP, can in turn can cause a DECREASE in HR (reflex bradycardia) via the baroreceptor reflex. Sort of sounds like what's happening with you. BTW, I've never heard of ADD/ADHD patients also being prescribed clonidine & BB's to sleep. Seems like a delicate balancing act...but I get the idea. For awhile, my son was taking both (not to help with sleep though.) The clonidine was supposed to increase appetite, etc. It just made him unbearably sleepy and he stopped after a few weeks. We've chatted here before about the overlap of ADD/ADHD symptoms and autonomic dysfunctions- definitely there! I agree that a lot more research needs to be done to understand this phenomenon. I know what you mean about the dispensing of stimulants being a hassle for both the doc and patient. That's one of few drugs that I have to very carefully manage monthly as docs aren't allowed to write prescriptions for longer. Don't worry about being a "difficult" patient. You're lucky enough to find something that's helping. Fight for it! Julie Thanks for your thoughts, Julie. I altready take an ARB for paroxysmal elevated HP, but ironically, the stimulant is dropping it even more. It's somehow giving me greater autonomic stability -- and removing lability. I worked out for the first time on the stimulant today, and was well able to keep my HR under 163, which is a success for me. Usually moderate intensity takes me up to 180+, which is not comfortable. I have an email into my doctor. We'll see if she responds.
  10. Julie, it's seemingly paradoxical, but not entirely. As MKoven pointed out, Adderall, like Midodrine, is a vasoconstrictor, that allows for better peripheral circulation and overall autonomic stability. It could be attributable to better functionality of the baroreceptor reflex. But as you suggest Julie, I am not sure stimulants cause a reduced heart rate in ADD patients. I know it calms them, as a result of increased frontal cortex activity (which removes a lot of noise), but I think it usually elevates heart rate and BP. Indeed, many are prescribed clonidine and betas in the evening, so they can sleep. As an additional note, apparently a decent percentage of POTS patients suffer from symptoms similar to ADD and bipolar (manic) patients in terms of brain fog, lack of concentration, short-term memory impairment. I know I do. I don' think the doctors have researched this angle enough. We need more neurologists in the field. Thanks for your thoughts, and hope to hear more personal experiences, as well as the willingness of doctors to prescribe this meds. I am a little reluctant to ask, as I know it takes a lot more administration to RX these drugs. I already feel like a difficult patient. Thanks much. Have a nice Sunday.
  11. You sound hyperadrenergic. I'd recommend suggesting and ACE or ARB, along with mestinon. to modulate the postural tachycardia. I just posted, expressing what's worked for me, and I've tried most of the primary meds. Good luck.
  12. Hi all. Frequent loiterer, occasional poster. So, I believe I have been dx'd with hyperadrenergic POTS. Elevated norepinephrine, urinary and blood plasma. While I suffered from occasional presyncope prior to medication (Mestinon, 60 mg, TID), my blood pressure usually elevates when I stand, and I become mildly hypertensive, and my heart rate increases 20-26 bpm. Indeed, I am taking an ARB to reduce my BP -- and it doesn't increase my heart rate one bit. I never had much luck with medicines to reduce my heart rate, which is mildly elevated even when seated (but not lying) given my level of conditioning. I tried the betas, coreg, and clonidine; the first two caused interference with sleep, among other issues, and the third actually increased my heart rate. Elavil did the same thing. FWIW, I tested as OI and hypovolemic during HUT, but Florinef never did me much good, unless mirgraines are good -- I take that back, I was no longer overfilling the 24-hr urine containers, LOL -- gross, I know; I take my humor where ever I can get it. So, anyhow, here's the interesting thing, and the salient issue of this post: I recently tried a small dose of Adderall (2.5 mgs), and it knocked my pulse down to pre-POTS level -- 59-61 -- and it reduced my BP down to 92/60. And that was for 2 days in a row. Ironically, Provigil, bupropion, and coffee each elevated my pulse and blood pressure. It's not a perfect fix, as even with the Mestinon, my pulse still jumps 20-26 upon standing, but still, my seated pulse is a good 15 to 20 beats slower than normal, as is my standing pulse -- nothing to sneeze at. It's my hope that I can further my conditioning (as I wont be going over 170 bpms when doing moderate cardio, at least that's my hope) such that POTS becomes less disabling, particularly the fatigue, pain and cognitive impairment. I was hoping to hear if anyone else has had a similar experience. Additionally, I am wondering if POTS cardiologists are generally comfortable prescribing amphetamine, versus Ritalin, Provigil or Midodrine. (I've read Dr. Grubb's study with Ritalin, and have heard anecdotally that he rx's amphetamine.) I have some left over from when I was suffering from fatigue, before I knew I had POTS, but only a few weeks worth. I am hoping that this is generally deemed within the standard of care, any my doc will approve of a course. My doc is usually open minded. Thank you very much for any insight.
  13. Sorry to hear of your pain. I can relate. Adrenaline surges and orthostatic hypotension both can cause body ache/fibro symptoms. A couple things worth trying: 1) magnesium sulfate bath (if you can take baths); 2) magnesium taurate pills (highly bioavailable magnesium that will loosen muscle tightness); 3) a tussin/DM cough medicine (http://en.wikipedia.org/wiki/Dextromethorphan), which can be highly effective for painful, tight muscles, because of its mild NMDA antagonistic action. As for scripts, I never had any luck with Cymbalta or Elavil, but Lyrica helps me, though it comes with a host of side effects, including compounded brain fog and weight gain. Flexeril, Soma, and Baclofen can also help. Hope you feel better.
  14. Glad to hear that you learned what was wrong, Mandi. I'm curious, how did you reduce copper plasma levels?
  15. Your doctor must have more data, including a histogram showing the stages of sleep you were in, minute by minute. Do any of the graphs state the stages of sleep, and the % in each? If so, let 'em rip. Unfortunately, the practice of many sleep docs is to DX and treat apnea; it's a bit of a boondoggle. Unfortunately, many of these docs are not attentive to the issues attendant to fragmented sleep.
  16. This is all too common in POTS, CFS and FMS patients. Often times, there are alpha intrusions which prevent stage 3 and stage 4 sleep. Every time stage 3 starts, your autonomic system activates, and your back to level 1 or level 2. Morgan, did you have much REM sleep? Usually, with this kind of pattern, you don't get much REM either. And this can contribute to cognitive issues, as REM is believed to be important for memory consolidation. My sympathies that you all are going through this. FWIW, you are not alone.
  17. If you have a cough, I would recommend holding off on the antihistamines, which will dry up your secretions, which you want to cough out. Guaifenesin (generic mucinex) to cough it up, and then DXM when you want to suppress the cough. Plain old Tussin from the dollar store works fine. Hope you feel better.
  18. I am a big fan of the DXM. Really helps my body pain, as well as suppressing my cough. I think it can increase HR in some -- and it's a no-no if you are on a MAO-i. It never bothered me.
  19. Candace, I am sorry to learn of your frustrations. If you can get your full report, including amount of time spent in the different sleep stages, I can help you interpret it. I am betting that you are getting alpha intrusions that are preventing delta sleep such that you are not getting restorative sleep. That fact that you slept 10 hours during your sleep study, and still did not feel well rested, and then fell asleep for naps in 7.5 minutes, is highly suggestive of something materially wrong with your sleep. I've taken Provigil, and it may keep you up, but it wont resolve feelings of tiredness if you are not getting restorative sleep. It's possible that it will help consolidate sleep, such that it is less fragmented, but I dont think it's likely to make a material difference. If you can get your full report and post it, or send it to me in a private message, I'd be glad to help out. Best, P
  20. Well, my POTS doctor did not order the TTT; it was my cardiologist. However, maybe he should have known better, as he did a poor man's tilt in the office, and my pulse went from 70 to 180, and then settled at around 130. Personally, I think that the 24-Holter monitor is very valuable as part of a POTS diagnosis. My cardiologist saw the report and told me that I am anxious and need to try and relax, as my average HR was over 100 (not an exercise day). Then I saw a POTS cardiologist, and when I related this advice as she reviewed the Holter-monitor data, she laughed, commenting that apparently anxiety strikes whenever I go from a lying to standing position.
  21. Access to non-FDA approved drugs to boot . . . I say go for it!
  22. Thanks for the suggestion. This happens to be the precise amount of melatonin I take. Unfortunately, this, alone, does not get me to sleep. I need to take a benzo (klonopin) or a muscle relaxant (flexeril), as well. Ironically, I am fatigued most of the day, but my body seems to run warmer at night. The daytime is my dress rehearsal. : ) Thanks for the good advice.
  23. Okay, this scares the heck out of me. I'm on Metoprolol ER 25mg. When I had my 24-hour monitor done, I did notice a lower heart rate at night, I think around 50's. I've been on Metoprolol ER for a long while and have been okay so far as know ???, though I have no idea what my heart rate is at night. This is really freaking me out. If I did just a regular morning dose, though, how fast would it wear off? Would it last all day and be out of my system at night? Maybe this BB is why I've had trouble with insomnia as well, though to be fair I've struggled with insomnia for years and years. I take an anti-psychotic that helps me sleep. Amber TF, I don't think you have anything to worry about, though it's worth raising with your doc. Incidentally, 100 mgs of Seroquel is a pretty good dose for sleep. Doesn't that leave you with a hangover? (I neglected to look if you are BP, which would change the equation.) In any event, I'd suggest taking it easy about the Metoprolol. I dont think you are at any significant risk of harm from too slow of a heart beat. But I can relate to being scared. Much of this stuff is scary, partly because so much of it remains to be figured out. Take care and hang in there.
  24. Vivid dreams are a reported side effect, FWIW. I cant say I ever noticed that. As for how much is in your system, you may want to research the half-life of the med. I would imagine most of it would be cleared by bedtime, unless it's an extended release. Hang in there.
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