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DizzyPopcorn

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Posts posted by DizzyPopcorn

  1. Thanks all for the responses, i appreciate it. 

    My PCP diagnosed me today when i showed her my TTT.  I even printed the diagnosis criteria from dysautonomia international etc. I think she was annoyed a little bit with me. 

    I'm still sad that i have to "twist arms" at doctors. They make me feel like im looking for drugs or something, while the only thing i want is to know what i have and feel better, thats all. 

    Anyway, now that i have pots, im not sure where i should start. Guess ill read the stickies. Water, salt and exercise is the basic, right? 

  2. 2 minutes ago, Jwarrior77 said:

    I know how you feel. I did my TTT test months ago and this was the findings: 

    Supine 5 min: 85 bpm, 131/85

    Supine 10 min: 90 bpm, 128/78

    Immediate Tilt: 122 bpm, 138/92

    Tilt 5 min: 108 bpm, 131/83

    Tilt 10 min: 115 bpm, 119/75

    Tilt 15 min: 115 bpm, 130/80

    Tilt 20 min: 146 bpm, 103/78

    After tilt resting: 121/96 (they didn't record my hr for whatever reason)

    They aborted it after 20 minutes because I felt nauseous and lightheaded. I asked the nurses after the test was done and they thought I had POTS. This gave me a sense of relief and validation. However when I talked to my cardiologist about the results he was very irritated/angry as if I was wasting his time and said I basically had 0% chance of having it. He claimed it was just "anxiety". He said the reason why my blood pressure dropped at the 20 minute mark was because I was "dehydrated". He also said because I didn't have these symptoms for more than 6 months at the time I didn't have it. Well guess what I have had this for well over 6 months now and im only getting worse.

    Honestly hearing this from so many Doctors really gets me angry. I have so many videos of my pulse ox showing my resting HR in the 60s jumping up in to the 120s. With POTS it's not a one size fits all criteria. Some people have dramatic increases in hr with it going up into the 170's when standing. Some don't. Some people have blood pressure drops. Some people have an increase in blood pressure. Some people's BP doesn't increase. Some people faint and others have never fainted like myself. If I'm missing something here mods please correct me. 

    As for your question I believe you have POTS and I think your doctor gave poor reasoning to why he thinks you don't. I think you should keep contesting. I'm trying so myself as well but I'm just so weak and tired and sick of doctors not believing that these symptoms I have are very real. 

     

    Grrr im sorry you're having the same response as i do. I have an appointment with my GP tomorrow and intend to defend my point with the results from the TTT and diagnosis criteria that i printed off of websites. I hope she believes me. 

    I hope as well that you find a doctor who believes you. Nothing is worse than feeling like trash and no one listen to you

  3. Hello all. Sorry for not being here a lot lately, I've been busy with life problems. 

    Ill keep this short. Ive been feeling off for 3 years with on and off symptoms. 4 months ago, i was put on medical leave because my symptoms increased and i couldnt drive anymore. Ive known POTS for about 2 years now and really pushed for more testing that way after the cardiologue ruled out heart problems.

    My problem, is that i had a TTT yesterday and it was negative according to the autonomist specialist. But he gave me 2 bad reasons for not believing him :

    1) You dont have POTS because your blood pressure did not decrease. And even if i (the specialist) would diagnose you with it, i cant really help you because you dont faint and the only thing i prescribe is fludrocortisone, salt and water.

    2) Your heart rate didn't really increase that much during the test like my other POTS patients, and when i reclined the table, your heart rate stayed high. Therefore, you dont have POTS since you didnt recover 

    However, this is false. First, the criteria for a POTS diagnosis (as far as i know) is either a rise of more than 30bpm upright, or an increase higher than 120bpm, WITHOUT blood pressure change. (Dysautonomia International, Vanderbilt, Johns Hopkins). And second, there ARE treatments for POTS even if your blood pressure doesn't decrease. 

    I asked for a copy of my TTT and got it. Here are the results :

    Before tilt (30 minutes laying down) : 90 bpm, 155/83
    1 minute after tilt : 129 bpm, 158/90
    2 minute after tilt : 121 bpm, 164/101
    3 minute after tilt : 123 bpm, 171/86
    7 minute after tilt : 112 bpm, 163/92
    10 minute after tilt : 113 bpm, 157/100
    12 minute after tilt : 119 bpm, 156/96
    15 minute after tilt : 118 bpm, 160/95
    17 minute after tilt : 125 bpm, 154/98
    19 minute after tilt : 125 bpm, 171/97
    After tilt laying on the table : 121bpm, 159/87

    What are your thoughts on all this? He suggested i have anxiety and "anticipate" me standing. This is false. Im not scared of frickin standing, i feel out of breath after a flight of stairs, exercising is possible but hard, im dizzy all day, i have shortness of breath, im cold then hot 1 minute after the other, sometimes eating cause me to have nausea etc... Im not creating all this. I had the best possible life before all this happened. Why would i ruin it and be anxious about it?? 

    Should i just contest and be my own advocate or just quietly stay in a corner and suffer in silence? 

  4. 4 hours ago, bombsh3ll said:

    I have also come across a product called Heart calm, which some people swear by. I understand it contains both potassium and magnesium. 

    I have not tried it myself as mine pretty much went when I stopped licorice but i think it comes with a money back guarantee if you are interested. 

    B xxx

    What type of magnesium is used in the product? Usually there's a compound with it, right? Like citrate. 

  5. @JaneEyre9 I think its a matter of philosophy then. I have severe food/medication allergies and i consider that to already be a criteria to not have children.  If you add dysautonomia to the mix, thats a 100% clear no from my end.

    But again, my opinion and my philosophy. I'm just not sugar coating it. 

  6. Just now, Pistol said:

    It could be a musculoskeletal-skeletal issue. I get pains in my arms and shoulders when I have muscle tension in my neck. I go to a chiropractor to get adjusted when that happens and it always helps. 

    I do the same as pistol. I do have left arm pains too. But ive been checked a billion times so no heart attack or anything. 

  7. 7 minutes ago, Sushi said:

    I also take a low dose of clonazepam for sleep and it doesn’t seem to interfere though I have been taking it for so long that I am probably habituated to it and don’t get the full effect.

     Makes sense. Thanks again for the info, i'll make sure to bring it to my doctor on my next appointment :).

  8. Just now, Sushi said:

    It is hard to describe clinically what this feels like. There is an empty feeling in the chest and just a lot of amorphous feelings (not psychological) of being in a critical physical state. The change is totally clear when it passes. Can anyone describe it better? In any case a small dose of Indica gets me out of it. A physician friend has the same experience and guesses that the THC calms the CNS.

    The only thing scaring me away from trying cbd or thc right now is my clonazepalm that i was forced to take daily while waiting for my specialist. I just simply can't function without it atm and my anxiety is at an all time high.

  9. 1 hour ago, MTRJ75 said:

    He talked about being able to lay a piece of loose leaf paper on his chest and visually see it flutter. This really resonated with the same thing happens with anything placed on my chest. 

    Except this is normal in many healthy patients with no dysautonomia? My father included and he does just fine.

    I do the same (for example, if i put my cellphone on my belly it will pulsate with it) but never really thought anything of it...

  10. 15 hours ago, bombsh3ll said:

    Thanks! I am so pleased your friend was successfully treated. I think diagnosis is the main barrier to treatment - the mean time from onset to diagnosis is 13 months, without counting all those who are never diagnosed at all, then after that is access to somebody experienced in patching for this indication. 

    B xxx

    Who has the knowledge to patch such issue, if you don't mind me asking? 

  11. 6 minutes ago, MTRJ75 said:

    I'm not sure, but I know people who use THC with great success as a sleep aid. Of course, your doctor would have a better answer than I would. The way it's been explained to me is that ideally it adapts to whatever the body needs at that point in time. 

    Are you going to be able to experiment with dosages within that system or is that going to be dictated by a one size fits all approach and every bottle is expected to last the every person the same amount of time? 

    The latter. Worst case i experiment under my own expenses first what works and then seek out a prescription from my doctor

    Thank you for the information, really appreciated. 

  12. 20 minutes ago, MTRJ75 said:

    Well that's pretty amazing and awesome. I'm assuming it's all regulated to ensure quality production then? If not, do they allow you to get the product from where ever you want? 

    If it's going to be free too, why not look into whether or not THC would help too? My neuro is a medical cannabis doctor too, so this may be where we go next...if affordable. 

    Isnt THC a stimulant? I dont want to be stimulated as i think im hyper / have too much adrenaline. All i want is peace! So i thought i had to stick to cbd only. 

    The products are regulated and available at all SQDCs (same dosage / brands) (Société Québécoise Du Canabis). You can even shop by % of thc or cbd

     

  13. 2 hours ago, MomtoGiuliana said:

     I improved to such a great extent I decided to come off the Prozac to see how I would do.  Overall I did not have worsening symptoms off the Prozac.  It's really hard to know if the Prozac actually helped or if I was just going to improve anyway.

    I guess you tapered off of it very slowly? 

  14. 2 hours ago, MTRJ75 said:

    I've been using it since January of 2018. It seems to be doing more for me under the hood than anything on the surface that I can directly connect it to. Like, I've rarely ever taken and noticed a certain symptom I was feeling was improved or relieved. Or if it did help in that capacity, it wasn't for an extended period.  I think it helps with my blood pressure (as I learned again last night) and can sometimes feel like it temporarily takes an edge off. If I take it the same time as medications though, it seems to amplify the effects (not all of which I want) and can even knock me out (for some it makes them more alert). 

    Two other things are that it's very difficult to figure out the right dosage for you. I still don't even know if I have that down. It's possible a person might need so much to make it in-affordable I guess (it's not cheap).  I have a disturbing feeling I may be one of those people whose optimal dose might take it out of my price range. 

    Lastly, a lot of companies just don't make a quality product. It's hard to know what's going into your product. You don't want to spend $60-80 per bottle on junk. There are probably a few reputable people on the internet who can suggest something that's been tested and holds up. I'm lucky enough to know the familiy who produces mine personally. 

    Oh, I take the oil, drops under the tongue by the way. Seems to be the fastest and most efficient delivery route. 

    Thanks for the comment about your experience. 

    You talk about the expensive side of it, but if its prescribed by a doctor, its free where i live. No matter the dosage

  15. 2 hours ago, Random-Symptom Man said:

    @DizzyPopcorn - I have tried CBD in both tablet and oil form.

    Note: Before I continue, CBD and THC are illegal in many places. I checked that CBD is legal where I am at the city, county, state and federal levels. There are only 2 manufacturers in the US that make 100% pure CBD (and water). The rest have at least small amounts of THC. THC is currently illegal at the Federal level in the US.  Also, when I researched CBD for medical use, it appears that it isn't well regulated

    No worries, im in canada, where its legal for any dosage of thc and cbd at the federal level. Im also of legal age. 

    Thank you for your experience with the substance 

  16. 2 hours ago, MTRJ75 said:

    110-120/75 for most of the last year or so when sitting/lying down. Was able to finally bring it back close to that with a combo of cod oil and extra beta blocker tonight. Still nauseous and wired with muscle burning from arms through chest. Gonna miss my endoscopy this morning but finally caved and took some and call neuro when I wake. 

    I’ve been flaring worse since stopping trazodone and starting bupropion (not that i was doing well prior to that either though which was reason for the switch and my initial post a week ago but BP was still okay then). Not sure what else it could be, though my first bed ridden pots attack was a year ago. I was on my back most of last October. Meds seem more likely than weather though unless it’s  just random coincidence.

    Have you tried other antidepressants? Bupropion usually isnt a first line antidepressant from what ive been reading. 

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