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Everything posted by lauralulu

  1. That's great- thanks for posting and sharing your improvement!
  2. Oops, I accidentally pressed 'reply' after I edited my above post (instead of pressing 'complete edit') and ended up with TWO posts that were wrong because I'd forgotten to delete out the big quoted part! And then when 'editing' forgot I was editing and pressed reply, which duplicated the post I was editing! DOH! I can't see any option to delete this so if a moderator wants to, feel free- OR you can leave it as an example of BRAIN FOGGGG lol
  3. Suzy- nice to 'meet' you and hope to get to know you around here. DazedandConfused- don't give up. I am in the same boat too. A difficult place to be! I've been through tests for endometriosis, interstitial cystitis, and had countless blood tests only to be told over and over "you are healthy". But I known something is wrong and I am almost CERTAIN I've hit the nail on the head with dysautonomia. I just need it proving. And you know what I am most afraid of?? NOT getting the diagnosis!! I was talking to my boyfriend about why I need to drink so much water (he was trying to get me to cut down) and even he said "Is that medically proven yet". He didn't mean to but it really upset me that. *I* know my own body better than any doctor. It might not be 'proven' but that doesn't mean something isn't wrong!!!! I understand how you feel but keep fighting- I'm sure it MUST be worth it in the end, and you are the expert in your body and you KNOW what's right and what isn't. So you NEED to find out so you can be HELPED!! Just because it hasn't been found yet doesn't mean it won't be, it just means it's harder to find! It's hard not to get discouraged, but try to keep going with the 'battle for a diagnosis'. We can be 'warriors for a diagnosis' together- along with anyone else in the same boat!
  4. It's interesting, now I know about dysautonomia, how it can make sense of things that before were puzzling!
  5. I haven't had this for a while and had forgotten about it, I had it before I knew anything about POTS and now it has returned, I am wondering if it could be related to dysautonomia. Basically, if I've had to stand still for a prolonged period, my feet get tremendously, uncomfortably itchy, it feels similar to heat rash/the itch of a mosquito bite- all over my feet- a bit sort of hot and prickly. It's also very similar to the feeling I got once when I was holding a faulty video camera that was plugged into the mains and I was getting small electric shocks through the metal screws holding it together! Hot, tingly, itchy. I got it this weekend on a walk when we stopped to admire the view... it persisted as I got moving again but only for a short time, then passed- so it seems to be related to when I stand still/inactive.
  6. A huge resounding YES to the question above. It's my most problematic symptom, because I also have an 'overactive bladder' (spasms which mean I can only hold relatively small amounts compared to normal) AND constant thirst/feeling of dehydration.
  7. That makes sense! I'd love to TRY DDAVP and see if it helped at all... not sure how open to that Drs over here would be... it's something I can keep in consideration for the future I guess.
  8. Greatly informative response, thanks! I believe this myself too
  9. It's such a dreadfully frustrating symptom, coupled with having an 'overactive' bladder that will only comfortably hold 200-250ml (with meds). I just hope I can get my diagnosis and some meds that will help...! I've learned to live with this, but lately it's gotten worse, to the point where my mouth is parched and I'm drinking constantly yet it feels as if the water itself is stripping my mouth of all moisture and it's passing through me like I'm a sink with an open drain!!
  10. I was just wondering, how would one go about having their levels checked? I'd like to find out because my main and most troubling (horrible!) symptom is being EXTREMELY thirsty and peeing a lot. I've been checked for diabetes mellitus (I've heard of diabetes insipidus too but was told by my uro there was no point testing me for that because it's so rare...). I really would like to find an answer as to why I am so chronically thirsty, it really gets me down at times, forever going to the bathroom, OR feeling like I'm terribly dehydrated (if I go for just an hour without a drink, I feel like I've been in the Sahara). Who would I need to see about it, an endocrinologist? And what tests would I need to ask for? I already feel put through the wringer trying to find out if I have POTS, I'm semi reluctant to beg my Doctor for yet MORE tests but I feel like now is the time I should be proactive about my health and if I feel something is wrong, surely it's my right to get it checked out?!! Any advice/info would be much appreciated.
  11. Those are good tips jump, thanks. I hope I will get my diagnosis of POTS soon and be able to try florinef! I am sooo fed up of the constant thirst (I know exactly what you mean about it being so bad it's practically painful!) and it is not a fun symptom to have with an overactive bladder!!!
  12. My worst symptom too- here's hoping we all find something that helps!
  13. Loose, stretchy skin is a symptom of certain types of EDS so it would be worth looking into that given that you have other symptoms too.
  14. Yeah that's the kind of migraine thing I get! I had the mirena in for a year last time and was fine, whereas before on pills, my body seemed to hate them! Good luck if you decide to go ahead and have it removed and try the new pill. I know how difficult it can be finding something that works without bad side effects!
  15. Well, I can't advise on the cycles because with my own experience, even as just one person, mine has varied so much. I've had a mirena once before, first time I didn't get ANY breakthrough bleeding from day one, my periods came regularly every 5 weeks, very light, no PMS, it was great! Second time (I had another fitted in December) I have only stopped bleeding for 3 and a half days out of the whole time since I had it put in!!!! I think the hormonal upset has added to my POTS symptoms as I've been feeling awfully weak. I only had my first mirena taken out because I thought my overactive bladder was being caused by unnatural hormones in my body (as that started when I first started BC). As for it coming out, it's nothing. Inconsequential. I don't even remember it hurting at all! So I wouldn't worry about that. I know it's a tough decision deciding what to take, I tried so many BC pills- I don't have the option of pills like seasonique myself because my Dr took me off any with estrogen in due to my 'silent migraines' (migraine aura) being a contraindication for a stroke. All the progesterone only pills I've tried just don't suit me, I get depressed and tired. So this mirena is my last resort!!! Good luck I hope you can find something that works for you!
  16. Wow, that's amazing. Good luck and I hope it continues!
  17. Ahh, yes, I heard about that- I asked my regular Dr for a hormone test but he did it via a blood test, which I read isn't as accurate as the saliva testing!
  18. I'm not Dr but for what's it's worth I reckon hormones could cause problems so I'd be pretty excited if I found that out too! I've always suspected mine to be causing me problems before I found out about POTS (had issues with severe pelvic pain episodes before periods in the past). The health-care system here has been so crappy though, I wasn't even referred to an endo. It's something I am going to have to think about pursuing...
  19. That's great news, always happy to hear of people's positive experiences with Drs and diagnosis.
  20. I could pretty much echo what Laura said too- you really do have to push with this. I've been having various problems since I was 19 (27 now) and until I found out about POTS I was just going from pillar to post with one thing then another. Had so many blood tests too and felt like my local Dr was beginning to think I was just a hypochondriac, which was awful. All I was doing was fighting to try and find out what was wrong. The tests weren't showing anything but I KNEW something was, and then I found POTS. I'm not diagnosed yet- I saw a local cardiologist who diagnosed me with IST but I want to have a tilt table test to make sure that's right as it could well be wrong, so I've been back to my GP for a referral to a specialist who actually works with POTS. I think that's the best thing to do, even if it means having to travel out of area, because this condition is so little understood and so we NEED to be seen by someone who knows how to recognise it! The DINET website has a list of physicians, I checked this out before deciding upon someone to see- perhaps you could do that too and make enquiries towards seeing someone 'in the know' because the worst thing is seeing people who are clueless. My cardio's attitude with me was rubbish, when I asked if it could be POTS or if I could be tested for that, he said 'well it could be and there are some tests we could do but there's no point really because you can't do much for that condition anyway.' !!! It makes you feel so helpless and alone and no one should have to feel that way! So I'd look for someone who will understand the condition and be able to diagnose you one way or the other- the worst thing would be if you DO have it but see the wrong person and so miss the diagnosis and end up just having to put up with it!!!
  21. Thanks for all the supportive responses, I feel much more bright and positive today so am not letting that Dr bring me down. I'll just find someone else! Annoying to have to, as you always hope that 'this' Dr will be 'the one' but it's not the end of the world. I think trying to find 'Dr Right' is harder than finding 'Mr Right'! lol.
  22. I'm sorry you've had such bad luck with your cardios too Rene. It really is beyond frustrating! The weight thing is so annoying as well because I've ALWAYS been this slim, and I CAN'T AND DON'T put weight on (despite eating plenty and healthy). So it's not like I can just put weight on! I'm 5'5 and 9 stone so it's not like I'm size 0 or anything, jeeze.
  23. OH MY GOD. I CAN'T BELIEVE (well, I can just about, after personal experiences but still) THAT HE SAID THAT TO YOU EITHER!!! Thanks for all the support. It really helps to have people who not only understand, but are also intelligent, strong, capable human beings who've had to put up with this crap! Also, he did mention I had to 'weigh up the pros and cons' of coming off the medication and whether the worsening bladder would be worth it if the tachy got better (which, tbh, it wouldn't). So I'm going to keep taking it, but as he's writing to my GP advising me to come off it, I may not be able to get it next month. So will have to see what to do then. There is a cardiologist working in my local area who has a 'special interest' in POTS who I might ask to be referred to. OR I am even considering going further afield, to Julia Newton in Newcastle, because I've heard good things said about her, and after meeting people like my cardio today, hearing patients reports that they are happy with the treatment and CARING from this person make me feel inclined to have the hassle of going further afield, for better treatment. I am confused as to why I have the IST diagnosis though, because my resting heart rate is usually around 80bpm. I know that's probably higher than an average person my age, but it's not 95+ and my HR has been known to drop into the 70s when I've been laying at rest. It makes me think he could be wrong.
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