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Liquid Diet

Discussion in 'Lifestyle Management' started by SDSue, Apr 28, 2014.

  1. SDSue

    SDSue Florida

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    I am in an extended crash and am having great difficulty chewing and swallowing again. I am existing on Muscle Milk, teas, and fruit juices. There must be a better way.

    Can anyone please share their tips on getting thru these times? I am too unwell to juice or prepare food and I am unable to shop, so must depend on others. Any ideas would be appreciated. I normally avoid the big allergy culprits of gluten, nuts, dairy, soy, and seafood.

    Thanks so much!
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    So sorry! :(

    If you would like to share the specifics of your crash symptoms, members might be able to share their experience. Like if you are herxing there are things you can do, if your OI or POTS is out of control, you might....etc.

    The food question is a biggy! I'd suggest using a blender to make your normal foods drinkable, but I don't know if you are up to preparing any food. I do keep things like soups from a health food store handy in case I don't have the energy to prepare things.

    Can you scramble eggs? Maybe someone could do a shop for you at a health food store looking for things you could use a blender on?

    Best wishes,
    Sushi
    Valentijn likes this.
  3. SDSue

    SDSue Florida

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    Thanks, Sushi!

    Let me preface this by saying I HATE talking about my symptoms. Perhaps that's from years of not being believed and being called "hypervigilant" and "neurotic" and "anxious". I don't think I'm herxing as I'm not trying to kill anything currently. All my usual symptoms are on overdrive: non-stop serious headache, weak, can't stand, blurred vision, muscles twitches, worse brain fog, trouble reading, muscle pains, etc etc. Normally I can get to my sofa for the day, now I'm in bed in the dark.

    My sitting BP is usually low (85/48 ish) and HR is 70.
    Upon standing BP goes level (110/100) and HR 140+.

    When I crash hard, as I'm doing now, my BP is all over the map, from a high of 160/98 to a low of 68/38 or non-registering. It's so hard to know what to do when it's this irregular.

    So yeah, POTS is a huge issue. Is this a POTS crash? Or is this the fallout from sitting at the table with family for Easter dinner? I intake a LOT of fluids and apx 1 tsp of sea salt daily. I wear an abdominal binder which seems more effective than support hose for me.

    Is there a liquid supplement that's better? I cannot currently use and clean a blender, so I'm looking for instant food sources.

    I appreciate any help.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @SDSue

    Your HR and BP pattern could easily be causing the awful symptoms you are having. With a pulse pressure of 10 upon standing, you probably feel like total crap! I once had a pulse pressure of 8 on a TTT and it was a terrible experience.

    Are you taking electrolytes other than sea salt? Some of us find that ElectroMix is a good one. You also might try more salt. Sitting up for Easter Dinner and eating a "normal" festive meal could definitely have fallout.

    Some people with BP and HR issues feel better reclining with their upper body raised 8 or 10 inches. My cardiologist says that it is easier for the chambers of the heart to fill in this position. Others are better lying flat--but you could experiment. It sounds like you may not be getting enough blood flow to the brain right now.

    I don't know anything about liquid diets but I'm sure you will get some responses from those who do. Can you listen to books on tape while you are lying down? This is a boon for some.

    Best wishes,
    Sushi
    ahimsa and Valentijn like this.
  5. RML

    RML Senior Member

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    I don't have these issues currently but when I first got sick, difficulty swallowing and chewing food was a big problem for me. Especially crunchy or hard food, felt like getting stuck in my throat unable to go down further, so I avoided them as it was very uncomfortable.

    At the time, I tried things like porridge, weetabix left to soften in milk for a while, fresh made veg soups blended completely smooth, fruit smoothies, very soft milky mashed potato, hard boiled eggs mashed with a fork add a bit of butter or mayo to soften it further, or scrambled eggs either. Carrots, peas, turnip, squash all mash well too. it might not sound too exciting or tempting, more like baby food, but it goes down easy and still getting decent food and nutrients.

    I can't help with the reasons why this is happening or how to stop it but some of them might help in the mean time. My issues seemed to ease but I still have a lot of different other food and digestive problems now.

    Currently I'm doing veg juicing. Im not replacing food meals, not that extreme, but having one a day and hoping to up it to two a day soon. I manage to throw in 4-5 green veg in one glass that it would be hard to sit and eat that much veg on a plate in one sitting, but can down a juice in a few seconds. Perhaps this could be useful also.
  6. SOC

    SOC Moderator and Senior Member

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    @SDSue
    That sure does sound like and OI (possibly POTS) crash. Your BP, HR, and symptoms combination should make it easy for even the least-informed GP to send you to a cardio for a tilt table test (TTT). You might even get treatment immediately directly from the GP. There are meds that can improve those symptoms significantly. Florinef and/or midodrine are frequently used for OI in ME/CFS, although there are other helpful meds.

    I suggest you get to a Convenient Care, ER, or other prompt service medical facility ASAP while your symptoms are really clear. Sure, you'll feel like crap getting there, but that's the best way to look and feel if you want them to understand and treat properly. ;) Whatever you do, do NOT understate your symptoms, as many of us are inclined to do. Doctors are used to healthy people exaggerating their symptoms and often don't even hear people who are moderate in their symptom description.
    ahimsa and Valentijn like this.
  7. SDSue

    SDSue Florida

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    Wow, it's so encouraging to have so much input!!! I actually had a TTT recently and was declared "anxious" but normal, even tho my HR jumped from 75 to 140 and remained there, and my pulse pressure dropped to 10 ... and this was a cardiologist in the room interpreting the results. Of course, I didn't see the raw data until days later. I then talked my primary into Florinef which didn't seem to help but caused kidney pain (enough to keep me awake). My kidney function is already not good (GFR 52, normal is 89 for my age) and my mother died of kidney failure so I have to be careful about stressing mine.

    I'm hoping to get to a "real" doctor soon to try midodrine???

    Sushi, it's not that I'm glad your pulse pressure was that low, I'm just glad to know that it can be the cause of some of my symptoms. It's nice to have it legitimized. Yesterday I actually reclined with my head lower than my body as I remembered how good that felt at the end of my TTT. Not sure it did anything yesterday tho.

    Electro Mix is worth a try! Is it still necessary if I take magnesium, potassium, and a multi? And books on tape are a great idea. If I "watch" movies, I do it with my eyes closed much of the time.

    RML - great food advice. I can have my friend make a big pot of potatoes with mashed in veggies. That actually sounds really good! And even I can boil eggs. I'll just have to peel them in bed lol !!!

    SOC - you are SOOOO right about understating our symptoms. I've seen too many eyes glaze over before I'm even getting started. I want to say "If you can't even listen while I talk about the symptoms, how do you think I feel living with them?"
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Your cardio doesn't know much about dysautonomia! as even I can see that you meet at least two diagnostic criteria--jump in HR of 30 or more on standing and the low pulse pressure (as I remember, anything less that 18 is diagnostic for dysautonomia). Did your BP drop much? A drop of 30 or more, systolic, is also a diagnostic.

    I take Electro Mix plus regular magnesium, potassium and other minerals. It helps you retain fluid.

    There are also a nice range of "boxed" liquid soups at health food stores. Worst case scenario, drink them cold--better, pop a bowl of it into a microwave.

    Sushi
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  9. SDSue

    SDSue Florida

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    @Sushi. Yeah, I have nicknames for the cardiologist but they're best left off these boards lol. I was really angry when I saw the results. How much more diagnostic can you get? The results were sent to my doc who actually ordered the TTT, but she refused to interpret the results beyond the cardiologist's notes. This is with me using articles to back up the diagnosis. She wouldn't budge. I simply do NOT understand what the heck these doctors are thinking. (My BP initially dropped then leveled out at the 110/100 zone, at which time they lowered the table and patronized me for being anxious. There there dearie, you're just nervous about this test. The tech actually told me I needed to start drinking wine in the evening like she does when she's stressed.)

    It gets old having to fight for every single diagnosis. I fight for a while til I'm bed bound. Then I lick my wounds til I can gear up for another battle. It's maddening.

    Electro Mix it is! And boxed soups - why didn't I think of that. That's a GREAT idea. I just need simple things that don't need to be cooked.
  10. Valentijn

    Valentijn Activity Level: 3

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    @SDSue - getting the OI resolved somewhat might help with the eating. I don't have difficulty swallowing when my pulse pressure gets low, but I get extremely nauseated, to the point where I basically can't eat anyhow. This probably happens because digestion diverts blood to the GI area, which means less blood is available to help you stay upright. Possibly the swallowing issue could be a similar reaction to avoid doing something your body can't handle?

    Anyhow, with low pulse pressure, you might have low levels of norepinephrine. Recent studies have shown that ME patients over-express the ADRA2A gene, which can result in various problems, including lowering norepinephrine levels, which can result in blood pressure problems. I have low norepinehprine, and an NRI (Strattera) helped considerably with my OI problems. After the ADRA2A studies came out, I switched to Yohimbe, which directly represses ADRA2A and has the additional benefit of being much much cheaper and available in the US and some other countries without a prescription.

    Basically I do 100mg of Yohimbe from TWINLAB's "Yohimbe Fuel" twice per day. It comes in 400mg doses, so I have to split it into 4 capsules. But it's not super bitter like Strattera, so it would probably be just fine mixed in water or juice, if splitting it into capsules is too difficult.
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  11. SDSue

    SDSue Florida

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    Thanks, Valentijn. I know that I don't like to eat for the very reason you mentioned - I'm very symtomatic afterwards and food takes a LONG time to clear my stomach. I'm a little worried about yohimbe, tho, simply because it's potential side effects are so very similar to my daily symptoms.

    "When taken by mouth in typical doses, yohimbe and the ingredient yohimbine can cause stomach upset, excitation, tremor, sleep problems, anxiety or agitation, high blood pressure, a racing heartbeat, dizziness, stomach problems, drooling, sinus pain, irritability, headache, frequent urination, bloating, rash, nausea, and vomiting" - webMD (I was lazy in getting a source!)

    Makes me wonder if I'm actually a hyperadrenergic POTS case. Of course, when my TTT was done they didn't bother to check norepi levels. If that's the case, wouldn't yohimbe exacerbate the whole thing?
  12. Valentijn

    Valentijn Activity Level: 3

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    @SDSue - I did get some of those side effects when I first tried a full dose of 400mg. But I get none of them at 100mg twice per day. I was on the constipated side of things prior to starting it, and it normalized that for me. But maybe it will cause problems for someone with the opposite issue :p

    At any rate, it might be very helpful to get norepinephrine levels tested. Results of that could give an excellent indication of how to proceed.
    SDSue likes this.
  13. peggy-sue

    peggy-sue

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    I use a drink mix - Complan when I can't eat, but that wouldn't do your food intolerances any good at all. :(

    I did recently discover how to make scrambled eggs properly - and have become quite addicted to them, now I can get them perfect.

    I had a sneaky-peeky at a Delia book in a charity shop to find out.:redface:

    The secret is to start off with the butter melted in the pot at a low heat.
    Add the switched eggs quickly,
    turn the heat up and stir and stir and stir quite vigorously.

    (You want the liquid eggs to stay liquid, but get hot, right through.)

    When it starts looking as if it might get thick, take it off the heat, and turn it right down, keep stirring.

    After a few moments, put it back on the low heat and stir gently and slowly, using a back and forth movement,

    cutting through the eggs over a very gentle heat,
    until they thicken,
    and become perfect, smooth, creamy, buttery scrambled eggs.

    I like them with some peas or green beans in them - and some cheese.:)
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  14. SOC

    SOC Moderator and Senior Member

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    Would blendered protein/fruit drinks work for you? Almond milk, egg white protein powder, a banana (for potassium), some frozen berries, and some additional fiber if you think you need it. Buzz in the blender a few seconds. Minimal effort required. I add High ORAC Energy Greens once a day to my smoothie because it has good stuff I need, but mostly because I feel better when I take it and worse when I don't. ;)
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  15. SOC

    SOC Moderator and Senior Member

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    You could try taking your TTT results to another cardio for a second opinion. Be careful not to talk down the original cardio, though. They don't like being put in the position of criticizing another doc. If you can call around and find one who knows something about dysautonomia, that would help, of course. The Dysautonomia Information Network lists 2 docs in FL, one in Jacksonville and one in Pensacola.
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  16. SDSue

    SDSue Florida

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    Thanks for doing that legwork, @SOC. The one in Jax is, um, shall we say, at a place I won't go anymore. I've been kicked in the head one too many times there! But the one in Pensacola sounds promising. If I'm not mistaken, he's the one that has POTS himself? I think Sushi may have mentioned that?
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, he has POTS--great doctor. Used to love my consults--and that is saying something, right? :D He had been through everything with other doctors that we have been through! Since he was diagnosed though, he educated the medical community in Pensacola and now they are a lot more respecting of Dysautonomia.

    Sushi
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  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Is the Muscle Milk a meal replacement drink? If not, you could switch to something like Ensure or Boost.

    Area you up to a little microwaving? If so, you might like frozen winter squash (butternut &/or acorn) and ‘quick’ oatmeal.

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