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Possibly Pregnant and (super) POTSY!

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by penny, Aug 29, 2012.

  1. penny

    penny Senior Member

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    I've had a very exciting couple of weeks, a missed period and positive pregnancy test - woohoo! To keep it short, we've been trying for a while and figured it wasn't going to happen 'on it's own', so we are very surprised and excited.

    So I'm 6 weeks in (not much at all) and feeling mostly 'normal' except my OI has gotten really bad all of a sudden and it's making it difficult for me to function at work and home.

    I also made a couple of changes to my supplement routine (I know, I know). So I'm appealing to the collective wisdom and experience of this wonderful community! These are the changes that are in the mix:
    • Stopped taking Aleve (Naproxen) twice a day since it is not recommended for pregnancy: I did see some mentions of it possibly raising blood pressure (and so possibly improving my standing ability). This might be okay (baby wise) in the first or even second trimester.
    • Stopped taking milk thistle - I had been taking this twice a day for almost a year because it seemed to help my body process LDN better
    • Started taking K2 MK4 (menaquinone) - I added this thinking it might help with my apparent inability to handle calcium/vit. d
    • Reduced caffeine to a couple of cups of green tea on work days - again, caffeine is contraindicated in pregnancy (at least in large doses) but is also a vasoconstrictor so may help with maintaining blood pressure. I actually think I could drink more and still be under the recommended 'less than 200mg' a day.
    • And of course, probably being pregnant
    Any thoughts on the effect these changes might have on OI/POTS?

    Thanks in advance!
  2. SOC

    SOC Moderator and Senior Member

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    Caffeine is usually not considered a good idea with ME/CFS and can actually increase tachycardia which doesn't seem like a good idea with POTS. Sudafed is also a vasoconstrictor and (last I heard) is considered safe during pregnancy.

    I'd be concerned about the LDN. Do you know if it's safe for the baby?

    OI stuff is common in pregnancy. I've forgotten why in the many years since it was of immediate interest to me. ;) My doc suggested electrolyte drinks and increase intake of fluids.
  3. ukxmrv

    ukxmrv Senior Member

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    Consider taking asprin if you are not allergic and there are blood flow issues
    Also consider a form of folate if there could be MTHFR mutations in your family
  4. penny

    penny Senior Member

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    Thanks guys!

    I think the LDN is okay, I remember reading about LDN being used as an infertility treatment, with good outcome for fertility and the mother and child's health. But of course there are no formal studies, since almost all uses of LDN are off label. I also found a few articles about the use of full dose Naltrexone and it seems positive - "naltrexone is associated with improved maternal and fetal outcomes" - though these are for opiate addicted mothers soooo "improved" could be very relative. Considering it's used as an infertility treatment, and is deemed safe enough (at 50mg doses) for use, I'm pretty comfortable with my .5mg dose.

    Caffeine - I seem to do okay with caffeine (no noticeable tachycardia), though I generally do more of a drip feed (slowly nursing cups of green tea throughout the day) rather than a jolt (espresso anyone?).

    I think my 23&me didn't show any big red flags in the MTHFR area - but it's hard for me to read and translate to the Yasko snips - but I've been taking methylfolate for the last year, and will definitely continue.

    I'll look into the aspirin, though doesn't it lower blood pressure? I think that would be the opposite of what I'm looking for...

    So I think my plan for the moment is:
    • Add aleve back in. I have a week till my doctor's appointment and so this should give me time to see if it improves my OI, and then be able to discuss it more fully with him.
    • Increase my salt tabs (from 3 to 4.5g a day) - actually I did this a couple of days ago
    • Compression tights - order placed
    • 'Allow' my self three cups of tea a day (one in the am) - this should still keep me well under the recommended max caffeine intake but hopefully have a steady effect on bp
    • Try and do some small leg exercises
  5. Hope123

    Hope123 Senior Member

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    It's been a long time so I don't remember the mechanism but hormones in pregnancy among other things cause large fluid shifts in the body and lower blood pressure so that might be why you're feeling worse. You also want to look out for high blood pressure as well. If you get a chance, mention the POTS to your OB as they'll want to know about that and anything you do that increases or decreases blood pressure.

    As mentioned, increasing fluids helps and one thing I've learned is that it should be taken throughout the day every few hours and not gulped in a few sittings. Fluids means something on the order of 6-8 (or more for some people) glasses of liquid a day. My rule is for every cup of caffeine I take in, I have to take an extra glass of fluid. This will make you go the bathroom even more often though!

    For what it's worth, NSAIDS like naproxen raise blood pressure in some people. Check with your doc for safety in pregnancy; lots of OTC meds need to be taken with precaution or not at all during pregnancy. Also check all supplements; in some cases, they may not have much info on safety but if something is known to be potentially harmful, you and they will want to now about it.
  6. penny

    penny Senior Member

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    Thanks Hope :)
    I think you're right, my blood pressure has been really low lately, which could be both because of hormones and stopping the naproxen. There's often mentions of increased blood volume in pregnancy, but I haven't been able to find out when this happens, so perhaps my blood volume has yet to catch up with my pressure.

    And I do drink a ton of water - I have my own water glasses which my husband calls "vases" : ) I can't remember how much they hold but I think I probably drink around 100oz of water a day just because I'm thirsty all the time (not a new thing).

    I've definitely been doing some research on my med's and supplements, though there does seem to be a lot of "avoid unless the benefits outweigh the risks" surrounding medication usage - which is a pretty vague standard. Thankfully I have a good doc, who's been with me through much of my illness and is very understanding. Just have to wait a week to have the conversation.
  7. taniaaust1

    taniaaust1 Senior Member

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    I think the other was mentioning asprin due to the concern that you could have MTHFR polymorphism (those with it, its advisable to take baby asprin as MTHFR increases risk of miscarriage due to how blood can be with this polymorphism and taking asprin can in such cases prevent possible miscarriage). So dont worry about Asprin if you dont have MTHFR.

    I suggest to get doctors advice right away on your supplements and the things you take (even a phone call before your appoinment just asking him/her to check to make sure there isnt anything you need to stop right away). Without being proven safe during pregnancy best not to be taking things without doctors advice... its in the first trimester which many things are the most damaging and may do the most harm to a baby. Its right now, major things of the baby are developing eg the spine.... (my child was damaged and born with birth defects by something which would of happened at 6-8 weeks gestation.. in my case caused by MTHFR polymorphism.. so Im glad to hear you've had that ruled out).

    I hope your compression stockings you've ordered are thigh highs and not waste highs.. best not to have tight things like that around the waist during pregnancy (thou I know one can get them for pregnancy).

    Note.. some supplements which you may view as totally safe may not be. eg there is a website in which women talk about their abortion experiences using high dose Vit C. (so i suggest not to take more then the recommended dose if you take this).

    Check with your doctor how much salt is safe for pregnant women to be taking? (maybe this is something you need to be more careful about????)

    Pregnancy I guess may worsen POTS due to the body at the moment having to rapidly build up blood volume, I guess the placenta would be rapidly building (maybe it will get better later when its built blood volume up).. I guess you may need to drink even more water then you usually do.

    best luck with it all.
  8. penny

    penny Senior Member

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    Thanks Tania!
    I met with my doctor on Friday and have discontinued my baclofen and aleve, and cut back on my salt, everything else got a nod (basically LDN, vit's, minerals and a few amino acids :) Though I'm 'naturally' cutting down on many of my supplements because morning sickness has kicked in, which makes swallowing a bunch of pills dicey. I'm going to check on the vit. c, I have been taking 2g, but maybe should lower it just in case.

    As for the OI, my doctor said that the body lowers blood pressure during pregnancy and there's really nothing I can do to change that. And he seems right, the Aleve and increased salt didn't seem to help much.

    But the stockings are seeming to help, and I did get thigh highs so hopefully I'll be able to use them for a while. Man are they difficult to get on!

    Interestingly since the morning sickness got worse (the last couple of days), my OI seems less of a problem. Though I'm not sure whether that's because it's actually a little better or because I'm too distracted to notice it as much! I'll have to do another pmttt to see what the numbers say.

    It's hard with all of the factors to sort out 'where' my CFS is at, but I have the feeling that at least some of the pregnancy symptoms are displacing CFS symptoms rather than layering on top of them. Fingers crossed! The only constant so far seems to be that 'things are always changing', so we'll see.
    taniaaust1 likes this.
  9. Marlène

    Marlène Senior Member

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    How about extra potassium, are you allowed to take that during pregnancy?
  10. penny

    penny Senior Member

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    I think it's okay, there's a free online service that will do research on med's and supplements for you, and this is what they gave me for my vit/mins:
    But for potassium only this:
    I normally take about 900mg of potassium a day (spread out in 3 doses), I'm assuming that's not a toxic dose since the RDA is 3500mg...but something else to research!

    Were you thinking that potassium would be good or bad?
    taniaaust1 likes this.
  11. taniaaust1

    taniaaust1 Senior Member

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    I think (im not sure) pregnancy may increase blood volume. I do know thou that POTS can be worst just after having a baby... some actually develop it for the first time with that trigger. ***fingers crossed things will be fine for you**

    ohhhh I can imagine you trying to put them on when you are 9mth pregnant.. that would be hellish. (My sister due to having a baby only last week, Im well aware again how big those tummies get). They usually get easier to put on as you get used to them (but in your case cause you will be growing bigger.. you may not find that :zippit:

    Can i make the suggestion not to do pmttt during pregnancy.. I personally dont think its a good time to be putting your body throu the stress of those tests and starving your brain of blood. (besides...there is always the risk of a faint)

    Take care
  12. penny

    penny Senior Member

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    Thanks Tania, what happens post-pregnancy is pretty scary. I'll probably try and plan for the worst but hope for the best.

    Ha! yeah, true. The first time I tried to put them on it was so difficult and I felt so completely inept that it turned ludicrous - sitting on my bed in my knickers, with the tights boa constricted around one foot (that's as far as I could get them!), laughing (so I wouldn't cry), with my husband as audience! Now add to that a giant belly...an awkward comedy gold mine ;)

    You are absolutely right. I've been avoiding it because they are so unpleasant, which really should be a clue to the fact that they aren't a kindness to the body. Yep, definitely going to pass on that. Thanks again :)
  13. taniaaust1

    taniaaust1 Senior Member

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    I cried a bit the first time I tried to put mine on... as I just couldnt do it, it made my arms and hands ache and I was so worn out by the time I got the first one on, that I couldnt put the second one on myself and had to be helped.
    Im now able to put them on easily thou its certainly still not something I like having to do.
  14. penny

    penny Senior Member

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    Yeah, it's gotten easier with practice, a little momentum seems to make a big difference, both on and off. I still don't like wearing them, speaking of which, I should go put them on now. Bleh!
  15. CAcfs

    CAcfs Senior Member

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    So what amino acids are you taking?

    I have heard that they can be precursors to neurotransmitters and affect hormone levels like norephinepherine or epinepherine, etc....so I would be worried to take any during pregnancy, personally. Unless I did whey protein, which is a food. Those are my thoughts, because I have thought about aminos and preg.

    I would like to get pregnant within the year, so I have been putting a lot of thought into what I can and can't take, supplement wise. I am nervous about stopping the things that help me! But right now that isn't many things, haha.

    I live in So. Cal too....LA area, close to beach. Feel free to message me.
  16. penny

    penny Senior Member

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    Hmmm, I take lysine (3g), serine (400mg) and glutamine (2g) - I think that's it...The lysine is for suppression of viruses and the other two came from a nutritional test I did several years ago that showed malabsorption and protein deficiency (despite my being an omnivore leaning towards the paleo end of things at the time). The test also recommended glycine but I stopped taking that a while ago (didn't notice any effect).

    Here's what the teratogen registry said:


    So not a lot of specifics. I'm struggling finding much that seems immediately related to these aminos and pregnancy, but have just had time for a quick search. If you have the time/energy, I'd be very interested to hear what your thinking about them (and aminos in general)?



    I'm down in SD, but still relatively close when you consider this board has people from all over the globe!
  17. allyann

    allyann Senior Member

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    Congratulations!

    I have ME/CFS & POTS and have an 8 month old son. You can read my blog which I started at 21 weeks.

    I had really bad morning sickness that would play on my ME/CFS. I was totally housebound and could only move between the toilet and the couch.

    My second and third trimesters were much better and I got the increase of energy. I actually ended up with high blood pressure towards the end of the pregnancy.

    In week 25 of my blog I have some references that may interest you, especially around preparing for the labour. I was induced under an epidural to conserve my energy levels. Unfortunately my son had other ideas, his heart rate kept dropping so he was born under emergency caesar.

    My husband also took three months off work (carers leave) to look after me and the baby and minimise the chances of me having a relapse.

    Feel free to PM me with any questions you have as you go along.

    Allie
  18. penny

    penny Senior Member

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    That's great, thanks so much Allie! I definitely will message you, I actually considered it before, but didn't want to bother you!

    I guess I'm doing pretty well, so far no vomiting (b6 is seeming to help with the nausea) and while I'm very fatigued, it does seem like sleeping more actually makes a little bit of a difference (unlike with me/cfs fatigue). And I even had one good day recently, where I felt able to do what I needed to do and could kind of taste what it'd be like to be healthy! Alas, that was a week ago and no repeat performance, but maybe in the second trimester. Fingers crossed.
  19. allyann

    allyann Senior Member

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    Got to say I loved being pregnant. It was the best feeling, especially when I first felt the baby kick. I was so excited I wanted everyone to feel it too. The fatigue was definitely different. Like you say more a normal tired rather than a flu type tiredness. I know that there is now some research going on to what changes when you are pregnant in the hope of providing some answers for ME/CFS.
  20. penny

    penny Senior Member

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    I am really excited! We had the first ultrasound and saw the tiny little peanut actually moving it's little legs! I wasn't expecting that and it was pretty amazing, I can't wait till I can actually feel it!
    taniaaust1 likes this.

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