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Pokey

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Posts posted by Pokey

  1. Thanks so much, Pokey! I just asked my psychologist for a script for something to give me more energy and I don't think he really understood why I was crying to him about being so tired. He said we all wish we could stay awake 36 hours a day. The nerve!

    So, at this point I will ask my EPcardio after I get my referral to see him again. Thanks again!

    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. Well, I had some hair left before I found a cardiologist. (I didn't tear it all out!) I actually found two and now I feel like a weenie. The first doc knew almost nothing about POTS, but is willing to learn and is local. The second doc know a great deal more about POTS, but is an hour away and out of my hospital network. I chose the second doc. I'm just tired of having to educate my doctors. I want to just go to them and have them say "this is what is going on and why it is happening..." and have them be correct. I've gone back and forth in my head, do I go back to the first one and "educate" him (aka: be his guinea pig,) or stay with the one who already knows how to treat me and just juggle all the paperwork? My husband thinks I'm overthinking this whole thing and should stay with the guy who knows.

    Anyway, we still don't really know why I have the bradycardic episodes, but we do know that the chest pain is benign. Doc #2 said that since I was going HYPER-tensive when they happened, it was not causing a lack of O2 to the heart, so that wouldn't be the pain. One thing we did figure out was that it has some weird relationship to my hydration status and serum osmolality. These episodes only happen when I'm thirsty, still medicated and have a measurably high serum osm (thick blood due to dehydration.)

    I would be absolutely explainable if I were a rat.....I even brought in a journal article to prove it. I think I'll go find a piece of cheese and then go find a corner in a maze to curl up and enjoy it........ :rolleyes:

    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. HI ....

    Well honestly I have never heard of pain medication increasing blood pressures....in my experience pain medications helped blood pressures of patients experiencing pain - as the pain markedly could increase their blood pressure -- as the pain symptoms diminished their blood pressure would decrease....& of course pain meds would be held if a patients blood pressure tanked for use of them. So is there something I need to know about dysautonimic disorders and the people that have them and how their bodies respond to pain meds?

    thx!

    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. YAY!!!! Hope the benefit lasts. Keep us posted. You've almost talked me into trying it.

    Julie

    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.

  6. 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.

  7. 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.

    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.

  8. 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.

  9. Hi -- Needing some guidance if you can help.....

    I've got that joint hypermobility thing -- or EDS=HM type and my b/p and my heart rate are giving me fits. I initially saw my primary for a baseline HTN <---- hypertension - with bouts of low b/p mostly happening after working on my feet for four hours as a cook. My b/p is high -- with the diastolic or bottom number or most important number never under 100........ Often 106 to 112....... Such as 152/110 =---> But because I also dip down low my doctor sent me to cardiology

    When it dips it's after working and I am very symptomatic and it takes 2 or more hours of lying flat in bed before I feel 'recovered' for lack of a better word.... The lows are in the 90's over 60's and I feel dizzy. I was on Diovan alone at first but cardiology added Metoprolol 50mg because my holter monitor showed I am tachy with my heart rate most often over 100.......

    Well I'm afraid of having a stroke with that high blood pressure most all the time. Then cardiology did a stress echo today. I was told to stop my Metoprolol for 48 hours prior to the test. Well my blood pressure shot way up to 177/122 and I had the worst headache of my life night before last. I called the oncall doc who said take the Metoprolol and go to ER. I did and everything gradually got normal - HA went way, b/p down to 144/106 - and they were happy I didn't have an aneurysm -- but no one much cared about the blood pressure.

    So I go have the stress echo today and the doctor says it's a good healthy heart. No issues. I told him I'm worried about a stroke running around MOST of the time with diastolics in the 100's. He counters well you also go low and I don't want you fainting at work. I said good point but I usually only dip low once or twice a week after working on my feet -- the majority of the time I'm high and worried about it.

    He said you are an unusual case and he didn't know what to do -- he says you have labile blood pressure and I'm not going to medicate you more. I asked him if he knew of other workups for labile b/p -- for say -- tumors etc.... He asked if anyone checked for Pheochromocytoma -- I said no. So he ordered catecholemines and metanephrines one by urine the other by blood. He clearly said he's not an expert on hypermobility syndrome issues.

    Okay that's about it -- All of this seems to me to be related to my EDS-HM perhaps with pooling etc.... But I wish I knew who to see about it - who IS comfortable seeing patients with crazy labile blood pressures and odd diagnosis..... The neuro doc locally and at a major center miles from here both uncomfortable with it - neuro stating she treats it only with MS etc.... The major medical center thought my fatigue was psychological (prior to my holter etc.)

    I wish I knew what labs to ask my primary doc to order or to suggest to order that might go with a dysautonomia diagnosis.......... Do you have suggestions for labs? Do you have suggestions for medications for me to run by her? A doctor recommendation?

    Without the Metoprolol just standing my b/p was 120's -- but the doctor doesn't seem that impressed or he's hugely uncomfortable with dealing with this........And to be honest the 50 of Metoprolol isn't helping me symptom wise -- I still get tachy with standing -- I still get dizzy from standing too long -- I get orthostatic hypertension --- I have high uncontrolled blood pressure. Who do I go to with this??

    Again I would fly anywhere to get someone who can help ..... I exercise daily - I've dropped 20 pounds in the last couple months , I eat healthy and my regular labs are very good. I need to keep losing weight -- But in the meantime I'm worried about these widely fluctuating blood pressures and nobody yet cares to do a tilt-table test -- they believe it to be overkill or perhaps ridiculous -- like so what? I tell them there are multiple kinds of dysautonomia caused by a million and one different reasons -- may I please get a true diagnosis so treatment is appropriate? They say no to this test......

    Any suggestions appreciated -- thanks so much -- I'm losing my patience and I need help!

    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.

  10. 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.

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