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Freaked

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Everything posted by Freaked

  1. Whether you remember dreams or not depends on how broken your sleep is usually. If you keep waking up and falling back asleep, you're more likely to remember dreams.
  2. Chaos, curious why you say that? An O2 sat meter is what they use in hospital to grade the severity of asthma attacks, for instance.
  3. I'm worried about the same thing, sue. Yeah IceLizard I could try that. But I think it's already a very low dose at least, since I don't actually have depression. I just know I'll feel like hanging out near an a and e again in case my tachycardia or adrenaline symptoms get even more out of hand. I hate how crazy this thing makes me act, but it's like living with someone threatening you with a big stick all the time :-/
  4. I highly suggest the oximeter. I get terrible shortness of breath and if it wasn't for the oximeter I would have thought I was on my last legs many times. Hope the neurologist helps you get to the bottom of things. I know how it is for doctors to say they don't know what to do and leave you scared.
  5. A GP just prescribed me amitriptyline cos I'm very stressed by how bad my POTS/dysautonomia has gotten, docs here can't prescribe benzodiazepines and he doesn't really believe POTS is real I don't think (he certainly knows nothing about it). But I know it increases adrenaline and I have hyperPOTS with very bad nausea, sweating problems, tachycardia, panic, etc. I'm worried this will make me worse or make me have seizures altogether. Anyone have experience with it?
  6. That's interesting. Yeah I'm almost certain my dysautonomia is autoimmune as well since it started during a bad flu, but my ANA is normal and my inflammatory markers other than white blood cells have been normal too. Weird.
  7. For the last month I've been getting daily fevers of 37.5-38C (99.5-100.4F). My bloods have normally been okay during this, with occasionally slightly raised white blood cells that docs said may have been from stress. As well as making me feel lousy, it's freaking me out cos POTS patients don't normally seem to get them. But I do know many potsies have low body temps at times. What are everyone else's readings like? Anyone else get fevers sometimes?
  8. Certainly do ask your cardiologist, but normally if your chest hurts when you breathe it isn't your heart (that's actually a question they ask in hospital to establish whether a pain is cardiac or not). The exception to this, iirc, is the pericardium. But over your heart is a common (and worrying) place to get chest wall pain when you breathe. I have this constantly cos I'm always short of breath/hyperventilating with my POTS. Unless you mean the actual beats hurt? That can happen with vasovagal stuff (does to me at least).
  9. Hi Jackie M, just saw your lovely posts. Thanks for your concern. Unfortunately I don't have any other family and I couldn't possibly ask my friends or my boyfriend's family to look after me when I'm this ill. I can tell even my boyfriend is sick of nursing me at this point and all this drama with my parents. I need basically round the clock care and I'm not very fun to be around; I can understand why everyone's sick of it, I just can't believe the way my parents are expressing it. I've suggested the possibility of a care home until this spell passes, but they're too expensive. My specialist is away atm too, so that isn't helping anything. Anyway they claim he's just humouring me for the money or i'm somehow fooling doctors. I've showed them newspaper articles and this forum but they say everyone here is a freak like me so haha. I've actually been trying to see a psychologist for a while, but ironically I've been too sick to go or they ended up being up two flights of stairs. It was a psychiatrist http://forums.dinet.org/index.php?/topic/24449-horrible-psychiatrist/ I saw before my TTT that started all this so I'm kind of scared of them now, considering POTS isn't very respected in this country. At the time they wanted to sue him, cos it's only when I get very ill that they start saying I'm crazy and anyone would fail a TTT (as well as my tachycardia, i nearly passed out after standing for twenty minutes with no provoking agent); when I'm doing fine they believe I have POTS. But atm they say they need to stop 'indulging me' and my boyfriend needs to stop 'playing along'. They did this kind of thing with my cat too; they kept saying she was fine as she was wasting away and refusing to bring her back to the vet until she died. Today my mother pulled my hair and started singing 'crazy person' at me mockingly when I felt ill. Yeah mom, I'm definitely the crazy one. My right calf came up in a bunch of bad bruises yesterday and my dad actually accused me of doing it to myself before even he realised how nuts that was. But at least they let me go to the hospital to make sure it wasn't a clot (they don't pay my hospital bills). He also accused me of not eating on purpose to make myself sicker, when in fact I make sure to force myself to eat even though every bite makes me want to vomit. I mean I had a scope when I was a teenager that showed I had an inflamed stomach lining and when it gets bad enough I start vomiting pink froth. He obviously thinks I have amazing control over my body. Sorry, ranting again.
  10. Afaik 160/100 wouldn't *normally* be enough to cause blurred vision. You might have just had a presyncope episode and an adrenaline surge. Or maybe it was higher before the nurse took it.
  11. My HR and BP have both been lower the past few days. For example I was lying down a minute ago and my HR was in the 50s, and I kept getting this horrible feeling like I'd stopped breathing or my heart had stopped and waking myself up. I know that before I was sick my drowsy HR would often be in the 50s and that was fine, but it hasn't been since then and now I think it's giving me low BP. Anyone get this?
  12. Very interesting. Had another episode tonight where my PP was like 16 and my HR was about 175. Called an ambulance cos I was alone but by the time they got there things had settled down a bit so I didn't go to hospital. Big mistake. My parents refused to bring me and said they'll have me committed if I look for help (which would ruin my career), and took my equipment away from me so I won't know what my BP's doing (lately I've been very ill and it's been all over the place). This after a doc the last day tried to get me admitted to a high dependency unit cos my readings were so weird. But anyway, I've ranted about them before :-/ Is a PP of sixteen dangerous? Maybe it isn't; it's just new for me so I find it scary. After a year I didn't think I'd still be getting new symptoms. Hopefully my cardiologist will get back to me soon and tell me if I should actually worry
  13. Yeah gjensen, I get the shaking afterwards too. And once that passes, I also seem to be less symptomatic for the evening. Basically what's happening atm is I start feeling short of breath, nauseous and cold sweaty in the morning and my pulse pressure narrows (higher diastolic, lower systolic). Then comes a full on attack where my blood pressure goes up, I feel very scared, dizzy, etc. Then shivering and shaking with my BP slowly normalising (once I've drank a lot of water and eaten something large and low in sugar). Then I'm okay for the evening usually (touch wood). This all happens just sitting up, but lying down seems to help.
  14. Yup. And when things get really bad I slur my words a bit cos I just don't have the energy to talk normally. Things sometimes just completely escape me. Part of it for us I'd say is lack of attention. It's hard to properly absorb information or do things when your mind is distracted by not feeling well.
  15. I think at this point you definitely need to go to some doc about it. Really your PCP or POTS doc would be the best person to know if you need to see a gastro.
  16. That's the gap between the lower and higher BP numbers, and it often gets too narrow in POTS and other dysautonomia patients. For example I've noticed when I feel lousy mine is often in the 20-30 range (it's supposed to be over 30). This can happen just sitting up for me. Most common in hypovolemic and hyperadrenergic POTS I think.
  17. Thanks for the replies everyone. I have a home blood sugar monitor, and my sugar would go towards low at times, but I never saw it actually hypoglycemic. I have been tested for a pheo too (though I was very asymptomatic that day, if that makes a difference). The BP spikes with the attacks are actually new, and the rest of the time my BP can be low or lowish, so I can't really try beta-blockers again according to my doc. Bit at a loss as to what to do. Benzos used to help cos it's definitely an adrenaline issue, but as I say, docs here only really prescribe SSRIs now and the ones i got said on the label not to take them if you had orthostatic tachycardia. Hopefully seeing a psychologist on Friday, but I'm not sure how psychological these attacks are; I don't think my body would even have been capable of this before POTS. Gjensen, your episodes sound kind of similar to mine.
  18. I have terrible nausea and vomiting sometimes, and for me adrenaline and acid seem to be the cause. What helps me are proton pump inhibitors or benzodiazepines.
  19. I seem to have hyperpots and I go through phases where my standing bp is lower and phases where my diastolic gets pretty high. If you have the raised catecholamine levels, that's really the main indicator, I thought.
  20. This has been driving me bananas lately. I've been very unwell, and along with it I'm getting these monster panic attacks basically every day. As in they last for hours, my BP spikes, I'm in a cold sweat shaking on the floor and the whole time I feel like I really might die. Terrifying. The sort of panic attacks normally reserved for people with mania. They tend to ease if I manage to eat something big. I never had panic before POTS, and I know it's a symptom, but how does everyone cope with them without benzodiazepines (docs in my country aren't supposed to prescribe them)?
  21. My partner understands for the most part, but my parents really don't. It is really a horrible feeling when you're very sick and those close to you are trying to blame you for it. Maybe she can go with you to your TTT or whatever POTS doc you have, and she might gain better understanding by talking to them?
  22. It could be that if you didn't have hyperpots, your standing bp would be even lower, since your sitting bp is quite low.
  23. Get this a lot. It may be our sympathetic systems, similar to sensations during a panic attack, though I never had one before POTS so can't be sure.
  24. I can't sit with my feet on the ground in a chair for more than half an hour, and my hr is always elevated when I do. I tuck my feet up under me in chairs or the car.
  25. Hi guys, thanks for the concern, just wanted to let you know I'm...well, not okay, but not worse (touch wood). My GP wrote a letter to a hospital telling them to admit me to a high dependency unit due to my BP, but my readings and bloods were okay when I got there so they just sent me home. My parents are no better, but my mom did sit with me in a and e yesterday, if accusing me of wasting the hospital's time and telling me to ask to see a psychiatrist the whole time. Still the fevers. Urgh.
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