1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

Very Bad OI Episode

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

  1. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,716
    Likes:
    10,234
    Amersfoort, Netherlands
    I was a bit more light-headed than usual all of yesterday, but was able to sit up for a couple hours before laying down. Then after making dinner (10 minutes standing up + attempted adrenaline rush when my fiance appeared at the window), I was unable to sit up at all. After laying down a while with no improved ability to sit, I finally ate a bit while laying down mostly.

    I'd hoped it would improve a bit after a good night's rest, but despite sleeping well, I'm still having big problems. I only managed about half an hour of sitting up before needing to lay down again. Usually I can sit up 3-6 hours in the morning before I need to lay down for an hours, so I'm pretty sure I'll have to lay down pretty much all day today. I'm worried that this isn't a temporary thing, but rather a progression of my OI.

    I think my light-headedness is related to fluid loss preceded by swelling (water moving from blood to other tissues?), since the light-headedness starts some hours or a day before the excessive urination. My weight dropped has 2 pounds in the past 24 hours, despite eating plenty and drinking extra water and electrolytes. Because of the attempted adrenaline rush, and my history of low epinephrine and norepinehprine, I'm worried that depletion of epinephrine and norepinephrine may be causing my current inability to cope with sitting upright. I was also off my supplements for about a week (until Wednesday), and had two vials of blood taken for testing on Monday.

    I get a bit hot and sweaty when upright too long, something that didn't happen before. I also start breathing more rapidly with my mouth open after laying down when I start feeling horrible while sitting up. My legs feel very heavy when I try to walk, and my arms also if I try to use them after sitting up too long. Walking 15 feet to the bathroom is a bit scary because I don't feel like I can control my legs well enough to keep them supporting me. I also have mild diarrhea this morning.

    Any suggestions, other than water, electrolytes, and laying down all day? I don't think raising dopamine would help, because that tested high when epinephrine and norepinephrine were low. I also tried licorice in the past with no effect, though that was in candy form, not pure licorice. Is there a non-prescription way to raise epinephrine and/or norepinephrine? Also, my symptoms (low pulse pressure, no increase of heart rate) are indicative of NMH, with no POTS involvement.
     
  2. ahimsa

    ahimsa Senior Member

    Messages:
    1,082
    Likes:
    994
    Oregon, USA
    I don't have many new suggestions for you--nothing much better than what you've already suggested (rest, fluids, etc.)--but I wanted to comment since no one else has responded yet. That does sounds like a bad incident but it could be just a bad spell and not a progression of symptoms getting worse. At least, that's what I hope!

    One possible suggestion, something that helps me (I have NMH diagnosis), is to sit in a recliner, or put a few pillows under your head/back, so that your head is slightly elevated and you are not completely flat. I don't completely understand *why* but when I'm having a really bad time I have found that lying back in the recliner is actually a bit better for me than lying completely flat in bed. I only lie down completely flat when I'm sleeping.

    Another very low tech suggestion that helps me is to get cooled down. So, drinking an iced drink can be helpful for me. Even when I don't *feel* like I'm too warm this can help. In a similar vein, whenever I start to feel nausea I will take off my top layer (e.g., remove the shirt or light jacket that I wear over a sleeveless shirt) and see if that makes me feel better. Usually just that much temperature difference helps me a lot. I might even feel a bit too cool, and shiver, but my nausea is gone so it is worth it to feel "too cold" for a little while.

    In my own case, I've learned that I often need to be "too cold" (my husband is often stunned at how cold my hands/feet/nose are) in order to feel better in other ways (less nausea, breathe better, etc.). I'm sure it has to do with low blood volume and problems with circulation--no blood in my extremeties means more blood in my body core--but that's just my poor brain's way of understanding it, not a proper medical explanation. :D

    Aside from these ideas about the only thing that really works for me is resting. Sometimes it's one day of rest, sometimes it's a full week, but I'm grateful that I always get at least some improvement from resting. I know that others on this forum do not so that's why I realize how lucky I am.

    These are just some rambling thoughts that might be helpful. I hope someone else on the forums can post something more scientific that will help you out!

    :hug: Sending hugs! :hug:
     
  3. Sallysblooms

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

    Messages:
    1,767
    Likes:
    332
    Southern USA
    UG, I understand your OI. I am really sorry. I hope this is just a bad few days. Could be, then it will improve. This is not fun and is scary too. Let us know how you are doing please.
     
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,716
    Likes:
    10,234
    Amersfoort, Netherlands
    Thanks for the suggestions and empathy :D

    It's still quite bad, after spending all of Thursday laying down. I sat up for 15 minutes in the afternoon and felt not-too-crappy, but my BP was 110/89, meaning a pulse pressure of 21. That's the lowest reading my BP monitor has managed to get without giving up and saying ERROR. Also pulse was 80, but is usually around 70.

    We emailed the ME clinic, but all they said was to wait until my appointment with the vascular prevention clinic or go to the GP if it's not an ME thing. So basically I'm waiting 4 weeks to see people that deal with diabetes and heart disease risks, in hope that they can help with what is probably neurally mediated hypotension. Pretty unlikely. Then on to an ENT clinic to make sure it's not my ears causing problems. :confused: THEN on to an orthostatic specialist.

    I wish I could just skip to the orthostatic specialist instead of spending months going to largely pointless clinics. I wasn't too bothered by the delay when I was still able to sit up ... but now it just seems like an eternity. Hopefully my naturopath will come up with some good ideas in the mean time.
     
  5. svetoslav80

    svetoslav80 Senior Member

    Messages:
    495
    Likes:
    155
    Bulgaria
    If you don't want to do water fast, maybe try juice fast for 10 days. Fasting is the only thing that has helped my ailments.
     
  6. john66

    john66 Senior Member

    Messages:
    131
    Likes:
    111
    Hi, sorry to hear you are feeling this way. I have had similar issues with bp dysregulation since trying Gc Maf. I dont think licorice candy will have any benefit, maybe sea salt would help??
     
  7. Sallysblooms

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

    Messages:
    1,767
    Likes:
    332
    Southern USA
    Too bad you have to go to those other doctors. You cannot just go to the last one?
     
  8. satoshikasumi

    satoshikasumi Senior Member

    Messages:
    113
    Likes:
    122
    You can try wearing compression garments to keep blood from flowing into your legs. I agree with the advice about staying on the cold side most of the time. It's also important to continue to exercise your leg muscles if you can (even if you have to do this lying down). The more your legs atrophy, the less ability the muscle pump is going to have to compensate for your OI by forcing blood back to your heart.

    When you do get to a doctor to work on this, be patient. Individual OI medicines have a low success rate so you may have to go through many different things before something works. Some medicines may make it worse.
     
  9. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,716
    Likes:
    10,234
    Amersfoort, Netherlands
    Went to the GP today. Felt awful still, and explained what had been happening. She checked BP twice on the left arm and had trouble detecting my pulse, then did it on the right arm and got a result that was fairly normal/high, though I felt like I'd be falling over any second. I showed her my BP samples from the past few days:

    She assured me that a pulse pressure of 20 or so is quite normal "for young people" (I'm 33). She sent me to the nurse to check it with a bigger cuff, and it was 135/75 (pulse pressure 60), though the nurse also said my pulse was weak. Since my BP is apparently normal, she ordered a bunch of blood tests to try to figure out why I feel so crappy while sitting up, and said she should have the results tomorrow.
     
  10. Sallysblooms

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

    Messages:
    1,767
    Likes:
    332
    Southern USA
    That is a lot like my bp, except my heart rate is much higher. My pulse pressure is always low.

    You can have POTS with good BP so I guess it is true for you also. Autonomic Neuropathy is my problem. Many doctors take a long time to figure out the reason, but I found out the day I went. I hope you can get some help.

    Dysautonomia doesn't have a lot of rules, you can feel horrid with good numbers and still have damage inside with the nerves that tell the heart, vessels and organs what to do.
     
  11. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    139
    California
    My doc says she hasn't seen a case of POTS yet where the ACE defect wasn't involved and most times the CBS + ACE. I was once bedbound with mito dysregulation and POTs for an entire year so can empathize with you. But I'm now 70% well and only got there by going after those factors but she insisted on doing it slowly. The ones that go too fast seem to crash and burn and I can attest to that as well!

    Angela



     
  12. Carrigon

    Carrigon Senior Member

    Messages:
    805
    Likes:
    72
    PA, USA
    Try real pseudophedrine. The kind you have to ask for. The brand is usually SudoGest now. Take two. Drink alot of water, wait four to six hours, the pressure will come back up. It will give you temporary relief. If you're lucky, it may even last two days.

    Celtic Grey Salt. Quarter teaspoon per day in alot of water. It will help.

    Other than that, not much. I'm getting severe attacks again because I stopped the pseudofed. You can only use it for awhile before it will strip your glands, adrenal and thyroid. Then you have to go off it again and wait a bit before doing it all over again. But pseudofedrine really does work on POTS attacks.
     
  13. ahimsa

    ahimsa Senior Member

    Messages:
    1,082
    Likes:
    994
    Oregon, USA
    I think whether pseudophedrine HCL helps or not may depend upon what kind of autonomic problems a patient has - depends on the sympathetic nervous system or something like that? I'm not being very articulate here but I just wanted to share that I have a diagnosis of NMH, no problems with blood pressure spiking or getting too high, and no problems with anxiety, and yet this drug really screws me up.

    I was not trying it to help my NMH symptoms or anything like that. I was taking it for congestion (cold/flu -- long time ago, don't remember details) when I had a bad reaction (heart palpitations, feeling uneasy, and other symptoms).

    I don't have any problems at all with midodrine (brand name ProAmatine) so I don't think it's the vasoconstriction action in pseudophedrine that bothers me. I don't know exactly why pseudophedrine caused such a bad reaction for me but thought I'd mention that it's something to watch out for in some patients.
     
  14. ahimsa

    ahimsa Senior Member

    Messages:
    1,082
    Likes:
    994
    Oregon, USA
    Hmm. This may be true HOWEVER it may also be one of those readings that mean nothing for some people but mean a lot for others. A pulse pressure that's normal for someone else may be horrible for you, and vice versa.

    Also, these measurements made in a doctor's office are so limited. There may be more than one thing going on that is not being measured. I hate it when doctors care more about number than how you feel.

    But even aside from that, I doubt the premise that everything is just fine at 20. It seems like 20 is either on the very low end of normal or too low. If 20 is just fine, then why can't folks donate blood if their pulse pressure is less than 25? That was the rule (at the Red Cross donation sites) back when I was young and healthy and I used to donate blood.
     
  15. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,716
    Likes:
    10,234
    Amersfoort, Netherlands
    Agreed - everything I've been able to find about pulse pressure says less than 25 is "extremely low". Maybe it's not a problem if someone is feeling fine when pulse pressure or blood pressure gets low, but I don't think that can be extrapolated to suggest that it's still not a problem when having severe symptoms that occur only when pulse pressure is that low.

    I've also been taking BP on my right arm yesterday and this morning, and I get the same results that I do from my left arm ... if anything, the right arm is a little harder to get a reading from. Based on her assertion that my odd results are from using the wrong arm, and her complete lack of knowledge about pulse pressure, I have about 0 faith in her ability to detect or interpret blood pressure problems. With the possible exception of hypertension :p

    I've been reading the dysautonomia forum (www.dinet.org), and it sounds like manual BP monitors are better than electronic ones for getting a BP reading when pulse pressure is narrow. My electronic one does fine when my BP is normal or high, but when it gets low enough, it just gives errors all the time. All I know is that I get into the low 20's, but can't tell if it's getting any lower.
     
    ahimsa likes this.
  16. ramakentesh

    ramakentesh Senior Member

    Messages:
    525
    Likes:
    82
    in response to acute episode i go and get 1 or 2 litres of saline. add licorice tea or florinef and other medical intervensions.
     
    ahimsa likes this.
  17. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,716
    Likes:
    10,234
    Amersfoort, Netherlands
    I drank 2, 2.5, and 3 liters of water, on the 2nd, 3rd, and 4th days of whatever this episode was, respectively. I usually drink 1-1.5 liters, and was back to normal levels of thirst and urination on the afternoon of the 5th day and all of the 6th day (today) thus far. I also loaded up on electrolytes - salt, potassium, calcium, and magnesium - on the worst days, with a smaller amount on the better days.

    The problem with "medical interventions" is that even getting properly investigated for (what seems to be) an obvious case of hypovolemia is like pulling teeth. I'll see if I can get my hands on licorice and/or other supplemental/herbal remedies while waiting for the medical profession to do something useful. :D
     
  18. greenshots

    greenshots Senior Member

    Messages:
    399
    Likes:
    139
    California
    Also sounds like poor (cardiac) ventricular output as well with the problem getting your BP successfully on the left and better on the right side. Your blood comes back on the right side of the heart (from the main circulation up into superior vena cava) then on to the lungs for oxygen snd out the left side, with the left ventricle being the last area blood collects right before it is pumped out, before its supposed to go to the brain and body. Since so many PWC's have poor ventricular function at rest or exercise, it would make sense but Dr. Vank would know much more abut that then an old ICU nurse. Plus, it just may be that they have more issues with right side diastolic function than left, although you may personally be different with the left side not pumping out quite as well. Also, heart defects can do that like murmurs. Not sure if you know of any but aortic valve insufficiency and Patent ductus ateriosis can be issues. PDA is when the hole between the right & left side of the heart doesn't close as its supposed to and so problems with blood flow can sure be an issue, as can clots. An echocardiogram can rule in and out somany things that I would think when you get a bit better, it would be worth checkng on. I say feeling a bit better since an exercise echo is best to really check all out most of the angles but for just defects like aortic insufficiency, mitral valve, and PDA, a plain old echo can do. Also, tilt table testing is very helpful! My cardiologist originally blew it off but My doc snuck behind his back to his colleague and got it ordered for me. But even he thought it would be ok and admitted to me later that he "owed her one" and just humored her on ordering the test (only a cards doc can order them since they have to be in the room the entire time & interpret the test) And, everything was fine, despite my feeling like 100% dog doody, until the final phase when I completely lost consciousness! I remember him calling her and grilling her on how she knew, what were the signs she went by, and he said I failed the test miserably! Ya know, Skeptics become believers when they do crazy things like actually LISTEN to their patients! I'm glad mine listens to me!

    Anyways, I'd seriously check for that ACE deletion if you can ever afford it, its unfortunately not on 23&me. But if I remember right, you spill potassium in the urine and tend to retain sodium, and BPs are low for years and then high BP usually sets in since its an upregulation. I had BPs of 80-90/50 my whole life with resting HR's of 90-100 and my mother was always like that too but now she's got high BP at 64, despite being 100#'s & exercising and eating healthy her whole life!

    Maybe you could get a urine potassium and sodium test covered through health insurance since mine was?. I had one normal but 3 definite abnormals.

    I've stabilized my CBS and most of the basic methylation stuff now but need more work for sure! I also take minerals, the ACE RNA (it also helps my anxiety, hot flashes, and my ACE defect, all of which seemed to lead to the adrenal fatigue (along with my fun double CBS 699) but I'm a new person now! Bye bye orthostatic hypotension (they told me I had NMH too but I still think I had POTS). You could for sure have a bunch of factors otherwise but between my years in the ICU with cardiac drips and monitoring so many critically ill patients and my own lovely experiences with myself, family, and my best friend with the ACE, I felt it might be worth at least entertaining the idea. Some like to try ACE inhibitors (ACEI) or Angiotensin receptor blockers (ARBS) with many of us but one such progressve doctor almost killed me doing that! When my new doc came to the hospital to evaluate me, she knew instantly why I was "obtunded" AKA, in a near coma like state that she referred to as a combination of a hyperammonia state along with lactic acidosis, and a hydrogen sulfide Tupor, which is kinda like hibernation where everything just sorta slows WAY down or shuts down to a near standstill and she explained why I almost died (hospitalized in ICU and then telemetry for SIX weeks with high ammonia & lactic acid, poor renal function, and severe mito dysfunction!) as well as often had black or dark circles under my eyes and often had alcohol, fruity, or rotten egg breath along with feeling so weak, shaky, & downright so exhausted that I felt like the walking dead! When I wasn't laying down flatter than a pancake! All in all, it was the roughest year I'd ever had before that but after 3 months of gradual treatments with my new doc (I never trusted the last one so never did speak to her again!), I graduated from the bed to the chair and getting up & around more and more. I could even stand up in the shower for the first time in a year! Now people would never even know and I'm so close but if I still really overdo it, I pay the next day. Otherwise, if I pace myself, I can do everything for 3 kids, a dog, my hardworking hubby, and a busy life! But I do have a part-time nanny to help so I don't forget and crash all over again!

    Anyways, I'm sorry I went on so long, one of my kids has the stomach flu so I've been up alott tonight already. I normally hate to even mention that year from pure He$% but I felt that if my story could help anyone else, I'd at least put it out there and what you decide to do with it is entirely up to you and your intuition since like my doc says, the patient is ALWAYS the best resource and knows more about their body and mind than anyone else, including us medical professionals! And I couldn't agree more.

    Angela


     
  19. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,613
    Florida
    Hope you're feeling better by now. Did your doctor look for infections ? I ask because when I first got h
    Pylori and some parasites, my oi got so bad that I could only stand up for a minute or so. My heart started racing and I had to lay down.
    My digestion had come to a halt too tho and I was blending my food.

    This experience got me wondering how many times those of us with oi look at our bp and hr to understand our symptoms
    when it's actually something else. Maybe a passing virus, uti, etc ? Maybe with our dysautonomia we're going to feel this more than others. I'm sure when most people get what I had, their ability to stand up isn't affected.

    Tc .. X
     
  20. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,716
    Likes:
    10,234
    Amersfoort, Netherlands
    It is a bit better now. I can sit up for 30-60 minutes before feeling super crappy now and my pulse pressure getting very low. The doctor ordered blood tests ... I think the white cell count and all that basic stuff, plus electrolytes and leukemia.

    It's been a more extreme version of what happens when I crash from PEM, though this time without any of the other PEM issues and no activity to trigger it. No flu feeling, no digestion problems, no nausea. But the OI has been much worse, and with some symptoms I haven't had before. Sweating, panting after laying down, throat feeling tight/rigid, legs and arms feeling heavy and almost unusable, trembling legs.

    But the crappy feeling followed by a few days of peeing like a race horse and worse OI happens with my PEM episodes too. So maybe something other than a crash triggered it this time, and caused it to hit me a lot harder.
     

See more popular forum discussions.

Share This Page