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  2. KiminOrlando

    I guess I can''t vasoconstrict

    I wish I could remember the names. Many are genetic, so you would have noticed problems from birth. Those can generally be ruled out. It was the spontaneous mutations that they were looking for in me. I remember they also took a bone marrow biopsy because they thought my mitochondrial DNA had been impacted somehow. All were negative for me. I wish I could help you more. All of this is a long shot anyway. I would try a place like Mayo or Cleveland Clinic where they check for all this weird stuff. It doesn't sound like you even have typical symptoms of a rare disease, which makes things even more difficult to find help outside of these big clinics. If you go or when somebody figures this out, please update us. Every little mystery that is solved can help someone else. I hope you find answers and I will keep you in the back of my mind as I continue to read and learn about my issues in case I blindly stumble on something that sounds like you.
  3. KiminOrlando

    Nausea

    Ask for a gastric emptying test before taking meds for this. This is how I found out I have gastroparesis. My gastroenterologist then put me on a med called Domperidone, but many Gastroenterologist won't use it because it isn't approved in the US and has to be compounded. It changed my life for the better though. One step at a time. It may be GERD only, or something else, but you don't have to go the Reglan route blindly. They should test before prescribing, in my opinion.
  4. Hello, all! This is a new one on me. I get a warm/hot "flash", a woozy feeling, and then I get this feeling in my nose starting from the bottom up, kind of like tingling or as if I used a nose spray or something and the stuff is slowly creeping up my nostrils. Not sure if HR went up because I didn't check it when it was happening. Has anyone felt this or similar? Is it adrenaline-related? Thanks in advance!
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  6. I'm not sure of the exact mechanics of this, but it's more stressful on the body to just stand rather than walk around - you can find a lot of stuff on line about it. It makes sense to me, since the TTTs test people in the standing position for so many minutes (I've heard 3, 5 and 10 - I've had poor man's 5) and not while they're walking.
  7. Hi Yogini, The ekg's I took with my Kardia have been diagnosed as SVT. It's a difficult diagnosis because by the time most people get to the ER the episode is gone, but with the Kardia you can catch it while it's happening. I mentioned POTS at my last EP visit and he sort of shrugged it off but at that time I really didn't explain to him what was happening with standing as I outlined in the post. I will mention it again next time I see him. I have never tried standing ten minutes without walking because I get freaked out when my HR hits 110 or 120 so I either walk or sit down. But like I said, this doesn't happen all the time, maybe once every day or every other day. But like I said, walking does bring the HR down so maybe not dysautonomia, but what then? Inappropriate Sinus Tach? Dehydration? Old age? During these episodes my sinus rhythm is normal. During the SVT episodes I am not in normal sinus rhythm. One thing I've read is that ablation is not a good idea if you have Dysautonomia but what if you have both SVT and Dysautonomia? I'd hate to think that ablation is off the table for my SVT. Jim
  8. p8d

    Magnesium?

    If you are prone to diarrhea be aware Milk of Magnesia and pretty much all magnesium can cause it. I was told maleate is the best salt for decreasing this side effect but I prefer to eat sunflower seeds.
  9. Have you been diagnosed with Dysautonomia and or SVT? What happens when you stand for 10 miuntes without walking? Generally with Dysautonomia your HR goes up when you stand and stays up whether you are walking or standing still for 10 minutes it should stay up. Also you indicate you donโ€™t feel symptoms and most of us feel worse-much worse - in an upright position. Though some with Dysautonomia have SVT, Dysautonomia itself involves normal sinus rhythm.
  10. WinterSown

    Nausea

    I totally agree on reglan; made me drool and my tongue shake, BADDRUG!. While in the hospital for nausea thirty years ago injections of compazine gave me lockjaw. ๐Ÿ˜ž Not fun. ๐Ÿ˜ž Obviously, none of us are diagnosticians, but we have similar problems and make some suggestions like looking at a basic GERD diet which is just some simple wise changes that might help you until you get to the doctor. I hope you feel better soon.
  11. Pistol

    Nausea

    @Jessica_Be careful with Reglan since it can cause irreversible side-effects. I took it for a while when I was extremely ill with GI problems but my PCP warned me to only take it for 2 weeks tops. I also took Compazine, Phenergan and Zofran. Now Zofran is all I take as needed for nausea. It sounds like you may have issues with gas since you mention burping a lot. It might be helpful to stop dairy and gassy foods?
  12. Hello, First time poster here. A typical scenario is I'm sitting on the couch for an hour and then stand up. My HR might immediately jump from say 65 to 100, and then within a few seconds it might be 110 or even 120. But as soon as I start walking it will start dropping down to the 80's or 70's. Then if I stop walking and remain standing, it might go up again. If I sit it will come right back down. This doesn't happen every time, maybe once or twice a day and usually in the morning but has happened later in the day as well. I have taken my bp in the standing position during these HR spikes but it's either normal or more often elevated. I do not feel dizzzy, etc. and probably wouldn't realize something was wrong except if I was checking my pulse or wearing a chest monitor. In addition, for the past few months, I'm also having two or three documented SVT attacks a week. These attacks are very different from the sitting to standing scenario just described. With the SVT, my HR will suddenly spike from normal to 190 for a period of one to ten minutes, and is not related to changing from sitting to standing. The SVT episodes end as quickly as they started. One second my HR will be 180 and within a second or two it will go back to 65. The EKG's are also different. When my HR elevates from sitting to standing, the EKG shows normal sinus rhythm and the return to normal when sitting is gradual. The EKG with the SVT attacks shows the SVT pattern. I have a Kardia ekg device so it's been easy to document. Does the sitting to standing HR behavior sound like POTS? Or could it be somehow related to SVT or even a normal reaction to standing after sitting for a prolonged period of time? I also read there is something called inappropriate sinus tachycardia (IST) but maybe that's just an umbrella term including POTS. I started noticing these sitting to standing elevations over a year ago but it's probably been going on a lot longer. I'm a 71 year old male, normal BMI, walk daily, eat healthy, and have stopped caffeine and alcohol. Currently not taking any meds. I also have 5 to 10 ectopic beats per minute (PACs) which are probably triggering the SVT episodes. Any help is appreciated. Jim
  13. Pistol

    Inappropriate Sinus Tachycardia... or is it?

    Hi - I am so sorry you have to go through this. It makes me sooo mad that there still is so much misunderstanding of dysautonomia out there!! If a cardiologist says a TTT is negative because you did not pass out then the cardiologist needs to take a seminar on how to interpret TTT's. If you are symptomatic and your BP changes or your HR increases and stays up ( you did not mention what your HR did ) then you have a positive TTT. It is wrong to only look for syncope. I had 2 TTT's, one I had syncope after Nitroglycerin and one I had tachycardia. The second one was positive for POTS based on the HR increase ( this is per my specialist ) but the cardio that did the test said it was negative because I did not pass out. And he was a EP! --- I saw 5 cardiologists and 1 neurologist but did not get diagnosed until I saw my autonomic specialist ( 7 hours away ). I would really request a doc with knowledge of POTS, you can call major hospitals in your area and ask who treats dysautonomia before making an appt. If the docs say they treat it then at least they acknowledge it's existence!!! --- Cudos to not taking meds just because someone tells you to. Beta blockers probably could be a start and they do prescribe them for IST but it sounds like you do not have that if your HR goes down with laying down. --- Have you checked the physician list on this forum?? Best of luck - do not give up - eventually you will find help!!!
  14. I did actually read that before posting mine but it seemed as though their attacks didn't last nearly as long as mine do
  15. Hello, I've recently posted about something similar but these episodes last a minimum of 6 hours, how long does your episode(s) usually last for? Thanks,
  16. StayAtHomeMom

    Inappropriate Sinus Tachycardia... or is it?

    You can try a second opinion with another cardiologist. Or search for a POTS specialist. Mine is a neurologist, so be mindful they are not always cardiologists. I would definitely see about getting a copy of all of your test results. Your tilt table sounded interesting and if they recorded the data correctly it may be unnecessary to repeat for a while. If I remember right there is a database on here to search for a specialist. You may have to travel. I travel 3 hours for mine. But it is worth it. IST is only subtly different. When I brought the possibility of POTS to my PCP she thought is could be IST ( I think it may be more common). I learned the hard way about taking meds before a diagnosis. Sometimes when it is not what is wrong the meds can make you feel worse. I would try upping your salt. It sounds like you are drinking enough water. Urine color and output are good indicators of hydration levels. Electrolytes may be helpful as well. The unknown can be scary but believe you will find your answer. Whatever it may be. And keep your spirits up. Good Luck!!
  17. Shane

    I guess I can''t vasoconstrict

    @KiminOrlando thank you. It was taken at 9:00 AM and apparently was a bit above normal. Don't know the exact number. Can you give me an example of a metabolic type disease?
  18. KiminOrlando

    I guess I can''t vasoconstrict

    What time of day were your cortisol levels taken? 8am? Have they looked at metabolic type diseases?
  19. Shane

    I guess I can''t vasoconstrict

    @ks42thank you. I will ask the Endo about this, I do know from reading on this Reverse T3 is basically ignored by most Endos I only found it by paying for the labs myself. @yoginithank you. That is helpful, I only am bothered with the head rush/pounding for like at worst 30 seconds, and as I said I could stand for hours. Also, would agree with OH but I just tried a poor mans OH test at home and no change in BP, as well during the TTT my BP stayed constant as well. In the running still for me are: 1. orthostatic "something" 2. Endocrine 3. (maybe I guess) CFS 4. Looking for something else like (say) sleep apnea but I don't see at 21 and not overweight and I don't snore so seems remote. Can't shake the fact that I am just hammered by hot showers, wake times/morning are brutal, and fatigue doing nearly nothing (plus no diagnosis after all these tests) just seems like autonomic dysfunction to me.
  20. Jessica_

    Nausea

    Thanks everyone! I messaged my neurologist about it and he suggested Reglan? To help with stomach emptying. Iโ€™m reluctant to try it until I know if that is even the cause. I will try and get in with a GI doc to get some testing. My guess is it is GERD since I have had heart burn problems in the past
  21. yogini

    I guess I can''t vasoconstrict

    You're very right that the you can have dysautonomia without a positive TTT. But Shane he says that he can stand for hours without getting orthostatic symptoms - other than feeling initially lightheaded (which is what some normal, healthy people experience). The part about being ale to stand for hours without getting symptoms makes me think it isn't OH. People with OH and POTS have symptoms being on their feet for prolonged periods - maybe not all the time, but at least sometimes.
  22. green

    King Kratom

    I tried Kratom today and it is pleasant and it does seem to have helped me out of a POTs fog. I am especially foggy today because I bicycled yesterday and the weather has been changing today, so two different things have been working against me.
  23. Interesting. I have a friend with above normal reverse T3 and free T4, with normal TSH and free T3. She was diagnosed with Thyroid Resistance Syndrome. It is my understanding that thyroid resistance syndrome can present with all the classic thyroid symptoms. It's apparently pretty rare, though, and maybe your endo's already ruled that out.
  24. Shane

    I guess I can''t vasoconstrict

    All endocrine tests, TSH, T3 free, Antibodies, serum Cortisol ... all normal.. T4 free (above normal), Reverse T3 (above normal) Endo seems unconcerned. Have CRH stimulation test next week. I assume if I had a thyroid problem it would already have shown up.
  25. ks42

    Magnesium?

    I love my magnesium citrate. I wasn't able to tolerate it for the first few years of this illness, but now that I'm trending toward the more hyperadrenergic end of the autonomic spectrum again, it's helping immensely. Helps keep my BP and HR regulated, at least a bit. I only have to take 100mg per day as I'm super sensitive to small doses of things, but I know others have had to take larger doses (I think normal dosing is upwards of 200 or 300mg?).
  26. My cardiologists both at UCSF and Mayo said most people take a month to see any benefit, although sometimes you can see minor effects earlier. Also, as others have previously mentioned, I was told Florinef depends on a high salt diet to work. So I was told I had to increase salt in order to see any improvement with the Florinef.
  27. I agree with StayAtHomeMom - there are many other things that can cause the symptoms you're describing other than autonomic issues, or issues with vasoconstriction. Hypothyroidism runs in my family, and all the family members who have it experience low body temp, wooziness getting out of the shower or in hot temps, and low resting heart rate. One of them has adrenal issues as well (that would be found with a cortisol test) that she believes causes some of those symptoms.
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