Heartandsoul

Sue1234, I'm glad you are feeling much better!!! I've not posted for a while as that head cold I spoke about way back went into a sinus infection and I had been very ill while caregiving a family member. I also had a very bad sore throat which popped up along the way. I felt so sick with extreme malaise and all the "feeling sick" stuff. went to PCP, got penicillin and the malaise lifted. Meanwhile all this time. I never had a fever. Pre-POTS I got fevers. Meanwhile my white blood count and other indicators of being sick like sed rate, and C-reactive protein don't ever budge from lowest point on ref. range. The jaw infection (osteomyelitis which gave me POTS) didn't raise any of these indicators one iota. I was very, very sick yet again had no fever. Osteomyelitis is very serious yet there was NO lab sign of me being ill. What preceded the jaw infection (what preceded was a series of root tip infections from one molar proven by X-rays) is why the ID doc put me on 6wks IV treating me for osteomyelitis as a clinical dx. The severe jaw pain was slowly abating as the 6 wks if treatment moved along. My feeling is that adrenal insufficiency is related. Still working on that. Best, heartandsoul

ANCY, There certainly seems to be a temp sensitivity spectrum going on with some of us. I'm sorry that you have to deal with such fluctuations as you've described. I also feel better when the outside air is cooler wc it is today. That said, I don't know whether to attribute feeling better today to lower temps outside or that I'm on day 5 of abx now for what turned into a sinus infection from the head cold. Maybe both but truly it is a guessing game. Like you I get worsened ans symptoms when I'm I'll. About sweating. I do sweat when I get an infection. And chills. Constant, constant fluctuations from super duper sweating to chills and that could be without a fever. Something is dis-regulated there. Also as I mentioned previously a tinge of stress and I am so boiling hot I'm surprised I don't melt like a candle. And I sweat too.

Navy blue, My symptoms began a short time into a serious infection which involved the base of my skull and required iv abx for 6 weeks. The infection subsided says the ID doc for I was treated "by the book" but the base of my skull is still painful and there is upper neck spasming along with sometimes a feeling of pressure in the region. I have been told I'm "fine" now but I'm not fine. I was told to go back to living my life by the ID doc and don't "worry" so much. I went back to this MD because I was trying to be proactive. The pain/ pressure is variable and It seems that the dysautonomia symptoms correlate to that variability. I also have the electrolyte imbalance etc I've described in other posts wc if were there prior to this infection never posed me the symptoms I now have. At any rate I am proactive and have appts w/ 2 diff. MDs upcoming. I wish I had some advice for you navy blue but I wanted to let you know that even though our stories are not exactly alike I too feel that I've had trauma and that I feel there's a poss. connection. H&S

Just wondering. ..... I have low sodium. No ADH. No aldosterone. I have low osmolality yet don't excrete much salt through urine. Theres a bit more. Thus I am seeing a renal md next month. I would imagine a renin test will occur. If you've had this renin test I'm curious re what came of it. Thanks in advance.

Sue1234, For sure I'll post about that. Btw ...did you ever get your renin tested? I've had a kidney function blood test and it always comes out normal. But I am thinking it's different than renin specifically. I imagine that test will be done. Also based on what you posted about you own bloating, gassy issues a friend of mine who has chronic Lyme had horrors going on gastro-wise. She got tested "the proper way" (her words) for fructose intolerance and that was the source of her stomach ails. She is on a fructose avoidance diet and feels worlds better. She was neg. for lactose, celiac and something else I can't remember. H&S

Prior to getting official POTS symptoms 2-1/2 yrs yrs ag. I did have a problem with bloating. My weight was creeping upward verrrrry slowly over time .... It was in my belly. My docs brushed it off. Although I had been using salt for low bp I was always able to keep my bp wc at a nice, steady 110/64. No tachy etc or no pounding of heart, no POTS adrenaline surges. Something went haywire and one day my bp spiked to 210/100. My feet and ankles were two big water balloons. Overnight mt weight had spiked by 7 pounds. A friend who worked for a hypertensive cardiologist said lay off salt. I stopped all salt immed. Over the next week I lost FOURTEEN pounds of fluid. Now I had a flat belly. For the 1st time in a long time I could wear pants that I had not been able to come close to buttoning at my waist. I felt fine. I remained salt sensitive thus stayed away altogether from it. Felt fine. then when POTS came about and it was discovered I had low sodium a heart rhythm doc told me to use salt salt salt. So i am but my belly is like I swallowed a watermelon. I have no aldosterone, no adh hormone, low sodium yet I retain fluid. Feel like a walking contradiction. And now I'm hypertensive. And I've lost weight and don't like my thin face. And this huge belly makes it impossible to wear my pants again. Or a skirt. I'm petite and skinny but have this huge belly. I have to wear huge elastic waisted pants and by late afternoon I have to get them off and put on a nightgown. I am determined to get some balance. I am seeing a renal doc next month who is supposed to love challenges and I was told can figure things out. Hope it's true. I have an endochronologist who is smart too and I will follow up with him. He's the one who thought to check my aldosterone and adh levels. Great thread. So glad for this discussion. P.s. If I learn anything helpful from renal doc...I'll share so that maybe it may help others. Hope so!!

Hi navy blue, I am in the process of trying to get past the effects of a head cold which for a few days was a DOOZY of a cold. Haven't had a cold in many many years. Now I guess I'm more susceptible. For me a bad infection requiring IV abx for 6 wks @ 2-1/2 yrs ago triggered POTS. Since POTS onset I've had two uti's (haven't had a uti in YEARS) and each of those made POTS symptoms worse including for a few weeks after the uti was cleared. But then finally got back to POTS baseline. This head cold wc slammed me did worsen POTS symptoms including making me even more heat sensitive wc also added to the mix. So now cold is lessened but still using herbs to help clear out lingering remnants so I think...I hope this "bug" is winding down. Too difficult to sort out what's what presently so just hoping I feel back to pre-head cold self soon while also continually working on reaching pre-POTS self baseline one of these days. Hope this helps and that you feel better SOON! Take care, H&S

Thank you all for your very helpful replies. I now know more of piece of what goes this POTS!!!

Hi Silvie, I use biocitrate magnesium. Sometimes I have to fiddle with dose to be regular. Generally I take @ 500 mgs at bedtime. I don't use Greek yogurt because of something I read about it but don't remember. That said I use Stonyfield fat free or low fat Plain yogurt and add THAWED frozen organic blueberries or org. Strawberries. Too tired to dirty up blender so mix in a serving bowl. This yogurt has live cultures and I've noticed a great difference for the good in being regular sine adding yogurt. I use stevia to sweeten. Can you eat quinoa? You can make enough at one time for 4 days. I don't bother to rinse before cooking it ....I just do what is easy. It's ready in 15 min. and that helps too as a soluble fiber. I add a bit of olive oil wc aids me as well. Want to add a good for you as well for the yoga! Heartandsoul

Hello Outofadream, Thank you for your reply. Yes. I was standing. Yet, that is very interesting about your own observation however yet heat doesn't raise your temp. Guess standing....heat...anything is possible to produce an issue. One new thing I've noticed lately after paying attention to cause and effect and this is new.....I've noticed that if I get even a tinge of stress I break into a sweat. I get boiling hot.

I conducted an experiment today. so now I ask...... if you are not in air conditioning and are hot does your temp rise? Mine does apparently. I was in the hot kitchen. I do have a head cold and was feeling particularly uncomfortable. Took temp. Was 100. But back in air cond. for 10 or 15 minutes Even with crummy head cold it went to 97.2. Am I that sensitive to heat? I don't think it was a fever. Caught this cold from hubby who caught from friend.... Gal at walk in clinic said it's going around. In the summer no less

For years even before POTS kicked in I have noticed that when my gut is off my brain is off. That started with Lyme. Now after aggressive antibiotic treatment I am better from Lyme but still gut/ brain always hand in hand. So when gut is fine brain is better cognitively speaking. Btw...whenever ON antibiotics gut was/ is perfect. So then I read about SIBO and said oh! Makes sense. Literature says SIBO can be corrected w/ abx yet if I have had SIBO it then relapsed. I can't stay on abx forever. Not on them now and gut is off. Yet SOMETIMES gut IS okay at times w/o abx Yet truth be told in general I am OVERALLS more functional when on abx. I never ever had from abx get bad stomach issues ....only better acting gut. Just need to say I am only occasionally on abx in recent years. Hope this is not too confusing wording of this post. I am gluten, dairy, sugar free.

I have had fasciculations on and off for most of my life. More recently I notice that it seems to happen when my NA is low ....now that My md is keeping track of sodium. Mine are painless but distracting. I had severe limb jumps after getting Lyme with brain involvement . I was kept awake once for 4 days without one single wink of sleep. It prevented me from falling asleep. I too Would have just fallen asleep and awakened by whole body jumps.... Nightmare it was! I was told it fell under the umbrella of epilepsy and so I need to avoid anti depressants as they lower the seizure threshold. Not that I could tolerate them anyway....bizarre side effects. Antibiotics for Lyme put a stop to the limb movements as I had Lyme encephalitis. Now off them but left with some issues still and clonapin helps but sometimes I get breakthrough myoclonus. The nighttime jumps were referred to as nocturnal myoclonus yet I can get this during the day. Sometimes I can feel it in my head when the jerk occurs even if it is just my thumb jerking..like a quick flick feeling in my head. It's creepy. Thanks for starting this thread.

I do feel for you and understand regarding the gluten sensitivity. And yes...some things main stream medicine don't buy into.....

Sue1234 I'm glad your son and husband in a timely fashion so that they are fine! Lyme is tricky as I'm sure you know in that many never get any Lyme rash nor the flu-like symptoms. It is not always easy to get a definitive Lyme dx. Just curious....did your naturopath give you a clinical dx? In spite of me having 4 HUGE raised, warm, pink areas along with a flu-like thing/ fever with one of the raised areas was a classic bullseye It took 4 years for a dx. after some spinal fluid was taken and examined and the doc put that all together with all of my symptoms. I was a systemic mess incl. brain. Yet with all that going on all I was positive ONLY for was the IFA. I was borderline positive on the Elisa and completely and utterly negative on the Western Blot wc I would learn in time that many fall through that crack as some of us don't build up antibodies to get positive bands on the western blot. (Btw...I learned later on that where I got those rashes was deemed a highly endemic area for Lyme infected ticks) Meanwhile during that time my heart beat at a steady 62 bpd and I never had bp issues. like you I had low bp but never any dropping of bp while upright. Never awoke with heart racing and adrenaline kicking up. It took many attempts for the Lyme to improve. Finally I was put an aggressive course of abx for a lengthy time. I got lots better. WAY better. But then high level, stressful events came into our lives, one after the other and that began to take me down.... piece by piece... way diff than Lyme. I read recently that this can can be the cause of adrenals being affected. But kinda knew it before the blood work etc verified this. I felt like my adrenals were shot. These stresses went on and on for a long time. Then on top of these major stresses came the second major infectious assault (not Lyme) and I was very very sick and needed IV antibiotics for 6 weeks. THIS was the straw that broke the camel's back as it triggered POTS symptoms. It was so hard to stand up plus more. If you don't mind me asking.... am wondering what is Hashimotos disease? Do you still have this? Best Heartandsoul

sue1234 Do you have a thirst issue or do you drink lots because of advice to replenish fluids? I drink lots because I'm so thirsty. This thirst arose when I had CNS/ brain infection from Lyme. I too am over 50 yrs old. I had some pooling and brain affected issues from Lyme but about 2-1/2 yrs ago another major infectious assault of a diff nature triggered severe base of the skull pain and racing heart, worse pooling, adrenaline, and more. I read your profile and learned a bit about you ...when POTS took over. When you look back to way earlier times do you see evidence of any symptoms. Also are you medication tolerant? I'm very intolerant. I am unable to work as well. It's not so easy sometimes....all of this... but I try to keep believing.... Best H&S

Thank you!!

If I log in and then leave for 2 minutes to go to Google then come back I must log in again. Is there a something to click that allows me to remain logged in for a bit? Thanks.

Sue1234 Thanks so much for the explanation. I see that your adrenals work fine. That is great! Yet your ADH and aldosterone remain low. Hmmmm. Just wondering how your overall getting about is if you don't mind me asking. Total Protein is 6.9. Ref range is 6.8-8.6. I will get that rechecked because I googled after your comment and see that you may be on to something. Best H&S

Thanks sue1234 for your response. I'm not sure of the next step but that test you mentioned...what does that show? Is that to look for Addisons? I'm glad that you're function is fine yet with low numbers were you told you had a degree of adrenal insufficiency? Thank you very much for the info on protein. That could be very valuable to know. I want to get that retested as I think mine was in normal range but maybe at the bottom. I have to look again at the comprehensive panel results to double check. Best, H&S

I don't have the whole story yet. But some clues. I think important ones. One of my 1st ?s on Dinet was about low sodium. Maybe a year ago... PCP told me use extra salt. Cardio doc said salt was band-aid w/o finding out why low NA. First dx was OI then rhythm md said POTS but bare bones answers just use salt. Finally recently another md said from what I told him maybe adrenal insufficiency. Tests showed zero aldosterone. Zero ADHormone. He will do more tests. I don't pass tons of urine like most POTS pts. Pass less urine than normal. I wish I passed normal urine for I am salt sensitive and easily edemic. But I need fluids. It was suggested that although edemic I may be chronically dehydrated as fluid goes to belly, face, thighs, feet and not to rest of body. But I need more work ups. I feel like a "walking" contradiction. I also have low osmolality wc I'm told fits in and just found that out too. Another recent test shows I am passing low NA through urine. So I feel that finally I know more than just "you have low sodium.....so take in salt...bye bye". It is a start to have some answers. Now I need more answers.

Very interesting discussion. What jumps out for me is the mention of copper. I started taking copper and zinc 3 weeks ago and I have in the last 3 weeks become more intolerant to heat. I have felt worse overall. I didon't know why I've become so "clammed out" , drained, and more. I will be interested LouLou how you make out once these food items are out of your system.

Bell girl, Thank you so much for your excellent, simple explanation of something you state is complicated. What you told me helps me greatly. Best, Heartandsoul

Hello, Have had relentless uti and a then a kidney infection, the latter of which has improved. At one point 3 wks ago put on saline (at ER) for very low NA and for dehydration. Last week was still somewhat dehydrated. Also NA still was somewhat low as of last week. Getting those 2 things checked tomorrow. So I am confused....uneducated. What is difference btwn dehydration and hypovolemia. At ER they said being so sick uses lotsa extra fluid. But at any rate can someone tell me the difference between the 2? Thank you, Heartandsoul

Pumpkin, I'm so sorry too for all you have to deal with as well. To answer about the wait...tSome docs are prone to wait until there is proof thus the 7 day delay in my case : ( I was JUST 3 days ago looking at that Nunn product at WFs. But have not bought it yet. It is great news that your energy has been boosted by you using it. Yesterday began eating tons of organic blueberries thawed. By early evening I was getting improvement with a few of the voiding issues and today still improved. I will have to give it a few days of continuing eating them to see if it really working. I did add some dried cranberries as well to my regimen yesterday between blueberry helpings but only small amounts of cranberry a time due to VERY high sugar content but every few hours or so I eat about a rounded TBSP. So maybe hopefully both are helping. Time will tell if fluke or real.. Best, Heartandsoul