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New to this..What has helped you with POTS? Pharmaceuticals? When were u diagnosed

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Questus, May 16, 2011.

  1. Questus

    Questus Senior Member

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    Hi people with POTS and OI,

    This is new to me...

    Have an appt. to see Dr. Klimas in June. Her assistant sent a bunch of paperwork. Part of it gives instructions to measure BP and heart rate upon waking in the A.M., then measuring ten minutes later after being up and moving around.

    I bought a BP/heart rate cuff, and thought this would just be to fill out the paperwork.

    Found that my heart rate is about 80 in bed and after ten minutes goes up to between 140-160. It stays around 110 when sitting with my feet up. Is this fairly standard for most with CFS and POTS?

    Have had CFS since 85, but have been declining the past five years, and now am wondering if this might be why.

    Did you have POTS onset at the same time as when you were diagnosed with CFS, or after...or before?

    Do you feel like having POTS affects your cognitive state, or mostly fatigue?

    Do most people here choose to medicate the symptoms with pharmeceuticals? Any tips that help you?

    Thank you for your help!
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have had CFS for a long time and POTS for two years. When I finally got to my CFS doc in another town, I started the right supplements. I was too sick to travel for a while.

    We kept adding good supplements for my symptoms and nerve healing. I was too dizzy to walk or get out of bed at first. HOT, high bp, head felt full of water, VERY high heart rate of course, air hunger, chest pain........I have made great progress. I am doing well.

    No pharmaceuticals, only for my BP that went very high with it. The BP is down now thankfully.:thumbsup:
  3. glenp

    glenp "and this too shall pass"

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  4. TinyT

    TinyT Senior Member

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    Hi Questus,

    I dont think all with ME/CFS have problems with POTS or OI, but it is common.

    I had mild ME/CFS for about 5 years before a severe relapse. My POTS came about around the same time as the relapse and worsened for the next 6 months so that non-pharmaceutical methods aren't working well enough as management anymore.

    I think that my POTS affects both my fatigue and my cognitive abilities. For example, I have a lot of problem with post-prandial POTS exacerbation (after eating) and cant concentrate on a full stomach. I also can't really think clearly for the first few hours of the day as thats when my POTS is worse. When my POTS is untreated (being off my beta blocker for 3 months to get tests done) it did make my fatigue worse as my HR consistently goes over 110bpm everytime I stand up, and will go up to 150bpm If I'm not careful and rest etc.

    Meds wise, I'm only in the process of getting my POTS diagnosed in the past few months. I am on a low-dose beta blocker (15mg) which helps with the tachycardia and will be trying fludrocortisone soon. I found the non-pharm methods not enough to manage it (e.g. increase fluids, increase salt, avoid prolonged standing, small meals etc.). I do drink 2-3 litres of water a day, home made electrolyte/salt mix and have lots of salt in my food to increase my blood volume. It helps some. I do almost everything in sitting and have recently started wearing compression tights during the day which helps too with blood pooling & brain fog.

    Good luck!
  5. taniaaust1

    taniaaust1 Senior Member

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    Im confused with how Klimas is testing for POTS. I thought it was always tested (if it wasnt being by a tilt table test) by taking it on waking (or after one has been laying for a while).. and then while standing still for up to 10-12 mins

    .... rather then saying when up and moving around. Someone could be active enough to be exercising for them and heart rate always goes up when exercising depending on how hard one is exercising so I'd think that could affect the results. Ive heard that when they do tilt table tests, patients are often told not to move at all (including not to wiggle toes) as it may affect the results.
    Ive NEVER heard of anyone testing for it, how you've been told when up and moving about.

    POTS symptoms are by many thought to be caused by blood pooling in the extremetories eg legs and also the abdomen and hence then not enough blood going to other places eg the brain ... so moving is better then just standing
    ..............


    I've no idea when I first got POTS but I realised I had it about 10 years after I first got ME/CFS, (I didnt know anything about POTS before that).

    POTS I know does give me fatigue and can affect my concentration and memory (most of my tiredness is POTS related). It can also cause me to start to shake and of cause gives dizziness. POTS on rare occassions can also make me feel nausea or give me a headache (thou these last two symptoms are usually directly from the ME/CFS rather then coming in secondary to my POTS).

    Ive unfortunately not had an opportunity to try to medicate for the POTS as my doctors dont understand POTS at all and dont believe in the illness.

    What has helped me greatly with the POTS is learning that I can help prevent an attack of it by keeping my fluid levels right up when Im on my feet and active. Ive drank up to 28 glass of fluid in an 24hr period at times just to deal with POTS and stop it from worsening. Sports drinks are good (as one can over drink water and the sports drinks have a lot of salt which is good for POTS). I usually drink 2 glasses of fluid just before I walk out my front door then carry two water bottles to drink where ever I go.. drinking out of them every 5-10mins.
    As long as Im drinking enough to be peeing at the rate of every 20mins (its so annoying), I can often keep the POTS at bay (but not always.. Ive drank on occassions till Im vomiting cause I drank too much but wasnt able to prevent or control the POTS.. but most of the time I can by doing that)

    Keeping cool is also important to help stop POTS symptoms... I used to go out walking but would wet my t-shirt before I left the house.. the wind blowing on it helped keep me cooler where I exercised (walked). I used to do this late at night when it was quite cold or raining which was very unpleasant (I'd be shivering) but it was the only way I could do any walking without POTS hitting me.

    Thirdly.. Im aware of all my POTS triggers and hence be careful to not mix these together if possible... eg eatting is one of my triggers... 1/ Eatting out (2/where I also cant lay) in a 3/warm restaurant.. a quarter of the time will make me get POTS so bad that I collapse onto floor and need to be carried out. That is mixing 3 of my POTS triggers together which for me is often a complete disaster.
  6. Questus

    Questus Senior Member

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    Sally, can you mention some of the supplements that worked for you?

    Also, are there supplements that people are using in the Metylation protocol that affect your POTS?...Asking anyone with POTS. Aslo, do people with POTS have problems taking LDN for instance?

    I drink a lot of water anyway, always have, and eat a high salt diet. My BP was so low for all my life, a doctor said, "Just eat more salt."

    GlenP...Maybe I'm looking in the wrong place, but mostly I find info about drinking things with a high salt content...Making your own.

    TinyT..
    I think this is how it affects me too.

    Maddening. I don't seem to have blood pooling, and had a few isolated dizzy, (one fainting) spell. Have not been able to tolerate heat since first diagnosed with CFS, but am certain I didn't have POTS then.

    I drink at least 3 liters of water a day, but it doesn't seem to affect the brain fog and added fatigue.

    Am wondering how most of you were diagnosed!

    Once a few years ago, I said to my internist..."My heart rate is 110'...He said, 'That's nothing, sometimes you come in here and you HR is 120.'

    If I weren't going to see Dr. Klimas, I don't know if/when this ever would have been discovered. Think MD's should do the ten minute standing test after consistantly getting high HR's from a specific patient. My doctor said, "A lot of small women have fast heartbeats." Huh???

    Taniaaust1
    Dr. Klimas does the tilt table test when you see her. Her instructions are to take BP and HR measurements upon waking while still in bed, and then ten minutes later after beeing up and around. I'm sure she means,...making coffee, feeding the dog, brushing teeth 'up and around'...Not heavy exertion.

    Standing 'still' such as waiting in line is much harder for me than moving.

    It boggles my mind that this would have continued to go undiagnosed if I hadn't made an appt. to see Klimas and went and bought the BP cuff per her instructions. A large part of making the appt. to see her was that I have declined so dramatically in the last few years...Am suspecting because of POTS.

    Has anyone with this seen a cardiologist? I understand it's neurally mediated, but just curious.

    Thank you for your help!
  7. ahimsa

    ahimsa Senior Member

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    Questus, I do see a cardiologist regularly. The first time I saw a cardiologist for this problem was in 1995 when I had my first tilt table test. After about 20 minutes my blood pressure suddenly dropped to something unmeasurable and I blacked out. I had another tilt table test in 2003 (when fighting my ERISA long term disability insurance claim, I had already gotten my social security disability on the very first try, no denials at all). The second tilt table test showed similar results, a sudden drop in BP after about 30 minutes.

    My diagnosis is Neurally Mediated Hypotension (NMH), a type of Orthostatic Intolerance (OI). At the time of my first tilt table test I did not get a diagnosis of Postural orthostatic tachycardia syndrome (POTS). My heart rate did increase after standing but it was still below the cutoff for a POTS diagnosis. Lately (the last few years) my heart rate has been increasing a lot more on standing. So, who knows, maybe I have both problems now? But it still seems like my primary problem is NMH.

    Today (skipping a lot of details) I see a cardiologist about once a year, mainly for a check-up and to monitor the medications that I'm taking. Not all cardiologists are helpful, and even my own cardiologist has often said to me that he's not an expert in autonomic dysfunction, but he has been helpful for me. Here's a cut/paste from another message listing my treatments for NMH:

    However, I want to stress that treatments that work well for me might be completely wrong for another patient. And I understand that there are several types of POTS which makes it even more complicated.

    I think that Orthostatic Intolerance and/or Chronic Orthostatic Intolerance has been described a bit differently depending on the doctor. Here's a handout on POTS and NMH from Johns Hopkins that might be helpful:

    http://www.cfids.org/webinar/cfsinfo2010.pdf

    And here are some other links that I have found helpful:

    http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788

    http://emedicine.medscape.com/article/902155-overview#aw2aab6b6

    I know I've posted these links a lot but I hope that they are helpful for someone out there!
  8. TinyT

    TinyT Senior Member

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    Hi Questus,

    I make my own salty drink/rehydration mix. I use the same ratios (more or less) as the rehydration/gastrolite type sachets you get from the chemist. You can also get a product called vitalyte in the US (Aquaforce in Australia) which some people use http://www.vitalyte.com/ I got my partner to pick up a few tubs on his work travels as well as the sachets as they are handy for when you aren't at home. You could always give it a go. Some people use gatorade too (lots of sugar though).

    Diagnosisfor me: I mentioned to my ME/CFS specialist GP (who is in the nearest capital city) my symptoms of dizziness, high heart rate in the morning etc. and he said "you might have POTS". Prior GPs always have taken my HR & BP in sitting so its usually normal then (no postural change obviously!). When I went back to my local GP and said "lets do a DIY standing test" she was quite surprised by the results! (DIY results indicated POTS). Any specialists I've seen also test in sitting and say its normal. Which is stupid because I always make appointments in the afternoon (best time of day for me, POTS= less) and after I have drunk lots of water & salty drink mix.

    Unfortunately Dysautonomias and POTS are obscure medical conditions and not many Doctors know much/anything about them. Unfortunately some people get misdiagnosed with anxiety-type conditions due to their complains of racing heart etc. I've been trying to get tests/properly diagnosed for about 6months, symptoms on for about a year.

    Check out http://www.dinet.org/ and http://www.ndrf.org/. I have found both websites helpful.

    Standing still is much harder than moving as your leg muscles act as a pump to keep your blood flowing. I find standing still or just standing in general pretty tough.

    I have tried to see a cardiologist. The one I saw at my local hospital was pretty clueless and tried to get me to do an exercise stress test (just a single test, not test- retest aka Stevens protocol). He implied that I was exercise avoidant (jerk) and that we should do the exercise stress test "just so I could see how much I could really do".

    When I get the results of my Tilt table test, my local GP (who is supportive, but not very knowledgeable) will be referring me to a neurologist in the nearest capital city who specialises in Dysautonomias. Seeing a specialist can be very valuable, but you need to see one who is Dysautonomia/POTS literate. Check out some of the local online support groups/forums for dysautonomias, they might be helpful. A neuro or cardio can both help. Alternatively, Dr Klimas should be knowledgable too and probably have good ideas for managing POTS and ME/CFS.

    Good luck!

    p.s. your internist sounds like an idiot! Small women have fast hearbeats..... *shakes head*
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Questus, I'll just respond to a few points that I have experience with:

    I don't have POTS but have had a lot of problems with OI and had a very abnormal tilt table test. (prescribed and read by an autonomic specialist)

    I found that both methylation supplements and LDN helped a good deal with OI. We are trying to figure out what might determine who is able to tolerate LDN--no certainty yet.

    Re: blood pooling. I don't "see" it in my legs but I do do better with compression knee socks. My autonomic specialist said that most of my pooling was in the abdominal (splanchic) area, and you might not be aware of this as there might not be visible signs.

    My present doctor is a ME/CFS specialist (that is all he sees). He is also a cardiologist. I showed him all my previous tests--tilt and every type of cardiac test--and his response was that I had obvious diastolic dysfunction and this was the source of my OI. I think this is probably true. Diastolic dysfunction can clear up when you treat some of the roots of ME/CFS. Maybe this is why methylation supplements helped.

    So right now, though I do the life-style things to minimize OI, I am concentrating on treating the roots of the larger syndrome.

    Best wishes,
    Sushi
  10. taniaaust1

    taniaaust1 Senior Member

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    Anxiety at a doctors appointment can put a heart rate up too.. hence why most doctors wouldnt think anything of a heart rate like that during an appointment.

    Thanks for explaining. That makes more sense to me now :)

    Pity that doctors dont know that that symptom points to POTS. I cant think of any other illnesses unless its balance issues in which standing is harder then walking.

    Nods its very bad that almost all of us end up with POTS yet hardly any doctors are aware of it. This really needs to be changed.. it should be made part of ME/CFS care that we should be tested for it. So wrong it isnt.

    Yes Ive been sent to two different cardiologists by my ME/CFS specialist trying to work out why I go unconscious and had all kinds of different heart tests done with the results that my heart is fine. NONE of their tests were laying to standing ones (and they werent worried about occassional bouts of mild tachycardia which did show up).

    Neither of those two cardiologists had ever heard of POTS (and werent interested in researching it nor reading the info on it I'd brought alone with me), when I asked them and tried to tell them what was wrong with me.

    My CFS/ME specialist thou Ive tried telling him I know my issue and my collapses is POTS, hasnt paid me any attention to POTS and hasnt gone and research it (he just said I could have epilespy causing the collapses as epilespy apparently dont always show up on the tests... I have to go for yet another brain test for that) .. so my medical people just send me for more brain scans and heart tests due to it. (which Ive already had done before!!! :( ) and no one will send me for tilt table testing (there may not be any where in my state that does it).

    The whole medical situation is frustrating!!

    My heart rate goes up as much as 55 beats per min when I go from laying to standing so I'd think that is quite severe POTS seeing its almost double what the diagnostic criteria for POTS is, but what can one do when no doctors are interested in that.
  11. TinyT

    TinyT Senior Member

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    Tania, that is awful! I feel for you. I found a dysautonomia/POTS support group on facebook, do you want me to make enquiries for you about POTS/dys knowledgeable specialists in your area? I think there would definately be at least one place in your state that does tilt table testing. Often public hospitals do them too at their cardiac investigations unit. Would you like me to help you find some POTS literate docs & testing centres?

    It does sound like severe POTS to me. Send me a PM if I can help :Retro smile:
  12. Questus

    Questus Senior Member

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    Sushi wrote:

    Did or do you have difficulty tolerating LDN? Is difficulty tolerating LDN associated with neurally mediated heart issues?

    Sushi, this is interesting that you're pooling is in the abdominal area. Do you have any physical manifestations...Any sensation of that happening?


    This makes perfect sense to me, and it's very hopeful as well! I'm going to wait until after I get a baseline of all my bloodwork before I start anything new like the methylation supplementation.

    What do you think helps you the most?
  13. Questus

    Questus Senior Member

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    Ahimsa wrote
    Thank you Ahimsa for explaining your particular neurally mediated heart issue.

    Have realized that I need to have the tilt table test, and let the Dr. tell me what I do or don't have. I've asumed it's POTS because my HR is so much higher when standing. And higher sitting than laying flat.

    The BP/pulse cuff I bought is #@%*, and often gives me the error message E3 often! E3 in the book says "Your blood pressure is too high or too low"...I want to say to it, 'I know, that's why I bought you!'

    Tiny T wrote:
    I think she's very qualified to recognise all the variables of this. If I'm not mistaken she's a Neuro-Immunologist. I may be wrong...She's obviously an Immunologist, but think I remember reading 'Neuro-Immunologist'

    Taniaaust1 wrote:
    Good luck. I hope you get help with this!
  14. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Questus, you asked what I take. I take so many good supplements. CoQ10 has been very good for my heart rate, bp etc. Correcting all hormone imbalance was the first thing. Bio compounded hormones like Tri est, pregenalone, progesterone, 7 Keto DHEA, Thyriod etc.

    Supplements for the immune system like Vit E, Vit C, Astragalas, AHCC, Proboost Thymic Protein, Maitake D drops, Vit D drops.

    Supplements to help the adrenal gland like Adrecor.

    The methyl vits like B12, SAMe, etc.

    D-Ribose power two times a day has been SUPER good. Carnetine and Co Q10 have taken my brain fog away completely.

    5HTP raised the Seratonin level so I could sleep and feel good again. It goes down like other things with stress and illness.

    Alpha Lipoic Supreme is healing my nervous system and helping the nerves in my feet.

    I add protein powder and First Greens to my smoothy each day. They are full of things that are good also.

    I take fish oil also.

    Those are most of my supplements.

    Antioxidents are SOOOO important, like the above Vit. C and E and A good multi. After bing on many supplements for a year or so, the MAIN things to help my POTS I think, was Liposomal Glutathione by Livon Labs, and ATP under the tongue.

    All of my supplements are guided by my doctors. Dr. Dzugan is in charge of the hormones. No migraines now. They have a schedule, three times a day for me. They look carefully into the brands for purity also.

    This has helped my CFS not be much of a problem now and is helping my POTS that I have had for two years. I was unable to get out of bed for many months, until I could see my doctor and get the tests. Now, I function well and I am happy again.

    I stay COOL, do not overdo it, never miss my supplements, DRINK a lot of water, etc. My bp is usually high or normal, sometimes low. Goes up and down. Before my supplments, it was VERY HIGH, that is wonderful that I rarely have it so high now.

    [​IMG]
  15. Questus

    Questus Senior Member

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    Thank you Sally,
    Where do you purchase your supplements?

    I noticed you said 'L-Carnine'...Just an fyi for anyone with Thyroid disease, L-Carnitine is a thyroid angonist and not recommended.

    (Also in reading about LDN, I found a very specific warning on the website http://www.lowdosenaltrexone.org/
    for people with Hashimoto's thyroid disease, (which I have). Just fyi for people with thyroid disease.)

    Btw, I exchanged the BP/HR moniter I had bought this morning for a better one. Still have a 30 point differential from sitting to standing, but the numbers are not as high.

    The numbers can vary widely depending on what BP machine you're using...Learned that the hard way.

    Thank you again for your help. I think if I can get my heart rate down, I can get a lot of function back.
  16. TinyT

    TinyT Senior Member

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    I agree Questus! I'm already noticing a difference with being back on my beta blocker for the past 2 weeks.

    Good luck with your tests
  17. Questus

    Questus Senior Member

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    Thanks TinyT,

    Do you or any others with POTS have low pressure as well? Has anyone gained or lost weight on beta blockers?

    Has anyone not had beta blockers work at all?

    Woke up this morning and used a new BP monitor. Registered HR at 90 still in bed, then 130 ten minutes later while standing.

    Do these numbers sound like ones any of you have had?

    Btw, there's a video (google POTS) and look at the videos, there's one from a Mayo Clinic Doctor who treats POTS, (it's on Youtube), and he said he used to use beta blockers on some patients and Midodrine on others. He had so much more luck with beta blockers over Midodrine, he now uses beta blockers exclusively.

    Would like to hear what meds any of you are using or ones you have tried?

    Thank you!
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Right now I am working on immune dysfunction, gut infections & dysbiosis, using anti-virals and most importantly taking a treatment that should "turn off" my positive XMRV. (I'm taking GcMAF and will take Nexavir soon)

    Sushi
  19. TinyT

    TinyT Senior Member

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    Hi Questus,

    yep I have low blood pressure too. In the mornings when I first get up its about 86-89 systolic/ 48-52 diastolic resting (in sitting). It gets a bit better after I've eaten & drunk something and I have 2-3 glasses of DIY rehydration (salt) drink each day plus 2-3 litres of water. By nighttime I sometimes manage to get it to 100systolic or mid 90s over 60 (diastolic).

    I have not gained/lost weight on betablockers but I haven't been on them very long. I started them around Oct/Nov last year and went off them in Jan when I got referred for a tilt table test (then waited until end of April- it was torturous off meds! Had my HR going up to 150 some days just trying to get dressed!). I've just gone back on them 3 weeks ago.

    I have heard of many finding the side effects of beta blockers to be too severe to tolerate them (low BP, dizziness etc). I've heard of quite a few patients actually finding midodrine more effective than betablockers but of course, everyone is individual. Thats where having a good POTS-literate doc is very helpful for trying new/different meds for POTS.

    Your HR sounds very similar. My resting heart rate is usually lower than that (even off beta blockers) and is around 80bpm and will go up to 120bpm. It goes up even higher if I'm having a bad POTS day or not avoiding POTS triggers/doing too much activity. Even on Betablockers I still get a postural increase of 30bpm some times during the day but my resting HR is lower (60bpm) therefore the max HR rarely goes over 100bpm. I still get exacerbations after meals too.

    My current meds
    - Beta blockers (propranolol) 15mg split into 5mg am & 10mg afternoons
    - Just started fludrocortisone (2 days ago) .1mg in the am (plus potassium supplements to counteract potassium loss)

    Definately start increasing your fluid intake and salt intake (if you haven't already, and have ok-low blood pressure) it may help some in the mean time until you see the Dr.

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