Always hoping

You may want to ask your doctor to check your aldosterone levels. I have read that many POTS people tend to have low amounts. I know that my gp was concerned about the long term use until they determined that I had extremely low levels of this hormone. Florticortisone is a replacement for it. Be well.

Thanks for replying and letting me know it's "normal". I need to come to grips with my body being so temperaments I guess.

Love the sports car analogy! And while I may feel great at times I'd be lucky to run a block. Lol. Thanks for replying.

While I know that I am one of the lucky ones who has been able to manage many of my symptoms in order to lead a somewhat normal life, this swing in symptoms is messing with my head. Some days within just hours/minutes I can go through the stages (in no particular order) of feeling ready to run a marathon, just feeling crappy, or feeling as if I need to dial 911! I can sometimes figure out what brought on the episodes and other times I'm clueless. Do any of you have these "episodes" of POTS that change within moments? While I am so grateful that I am no longer feeling terrible all of the time with POTS, these swings are really starting to effect me.

I was diagnosed at 44 and had been pretty sick for 4 years. I now recognize that I had many minor symptoms since my early 20s. While I hope that they check everything, I do believe that some people have POTS all their lives and just never get diagnosed. Be well!

Absolutely yes to the increase in symptoms after meals. For the first 4 years prior to diagnosis, I believed my problem was somehow related to my stomach. Within 1-2 hours after eating, my symptoms would significantly increase. A simple sandwich would be too much. While I am definitely able to control my symptoms more now, eating is still a major trigger for me at times (I don't even attempt to eat at a summer picnic - heat and food don't mix for me) And I don't like steps either! Be well.

This forum is an amazing resource. Welcome! I got sick 8 years ago, diagnosed 3 years ago and just a few days ago made the connection that issues I had 30 years ago were POTS related! Lol I hope you can find many answers here and some great ideas that will help to manage your symptoms. Be well.

Thanks for responding Kim. Like you, a bottle of liquid is always by my side. Lol. I'm sure that my body needs it when I crave it so badly. It just seems that when I am fully hydrated before a major episode, the extreme craving when it is "ending" is strange. It's always my sign that the craziness is settling down. And of course that I will be running to the bathroom for the next several hours! Not sure I would survive a summer in Florida! Stay cool!! Trisha

Hello everyone. I'm curious if anyone experiences this. When I have a bad episode (tachy, fainty, spinning, generally feeling like my body has gone scary crazy) I can tell when the episode is starting to end by the EXTREME thirst that comes. It's as if I can't get enough fluids for a long period and my mouth is like cotton. This has happened since I first got sick. Does this happen to anyone or any ideas why this happens? Be well!

I can't link my type of days directly with my HR either. Some days the HR is "bad" but symptoms are "good" and the reverse. For me, I think there are several factors and not just my HR. Many of which seem to bother Lily also. Be well.

Thanks Marigold! I'm going to print this out for my next visit with the hemotologist. He hasn't been able to understand why I don't hold the Iron and I didn't want to go through with a uterine ablation just "to see" if it helped. This so called hidden anemia seems to cause problems for a lot of us. The CBCs look relatively good until they actually test the Iron and Ferritin. My Ferritin was a 3. Perscriptions weren't helping so they wanted to have me take more. My GYN mentioned the infusions and I had 4 (once a week for 4 weeks). Helped so much with my fatigue and dizziness. My numbers started dropping again pretty quickly so I am now on a schedule of 1 infusion every 3 months. Fine with me - keep pouring it in! Thanks again for digging this article up!

Hello! Just wanted to let you know that I did see my EP today and he wasn't concerned about the arm numbness. I think it helped that I had a brain MRI in December, so he could see there were no signs of stroke from the previous episodes. He's assuming it is just another POTS thing and plummeting BP at times. Thank you for your replies!

Thank you for your replies Ladies and I will make an appointment with my EP to discuss it. At the time, I was actually heading into my PCPs office for a check up. I made it into the registration desk before they caught me (yes - yet another embarrassing moment) so within minutes of the episode I had my BP, HR, sugar, Pulse Ox and EKG checked. All came up fine besides being "tachy". I didn't ask how high that was. It's about the 3rd time it's happened in the 6 years of dealing with this - but it never gets less scary! Thanks again!

I have noticed this sometimes just by rolling over at night. Usually when I am sleeping on my back and then turn onto my side. My heart rate increases greatly, but comes down again within a few minutes. Maybe try leaving a Gatorade or equivalent on your nightstand and drink it as soon as you wake up. Maybe this would shorten the length of time that it occurs. Good luck!

I'm once again hoping that you experts can provide some reassurance on some of the craziness of POTS. You are the only people I know that can really understand! I'm one of the "lucky" ones that normally doesn't actually faint. I just get the head spins a lot and know when to sit down. I'm grateful not to have the associated migraines or nausea that is associated with this syndrome and mostly deal with the low BP, high HR and heat intolerance as my bigger issues. I had one of my scarier episodes again last Friday. It has happened about 3 times since the start of this (pre-diagnosis mostly). Out of nowhere, I get a terrible sensation from my waist down (like a rush of a wave) and then in the next second one of my arms go numb (no tingling or pins and needles, just useless). It lasts for only about 5 - 10 seconds and then the feeling comes back into my arm. Of course by this point, I've gotten into my normal position on the floor! Has anyone experienced this? Is it "normal"? The arm numbness is the really frightening part for me. I'm assuming that this is part of pre-syncope and if I had actually fainted I wouldn't notice the numb arm. Friday's episode was explainable (weaned off of Florinef 4 weeks ago and didn't eat much that day) but it also happened while I was in a seated position and had been for about 20 minutes. Fortunately it didn't happen until I had the car in park and turned to pick something off of the passenger seat.... another whole terrifying issue. Thank you and Be well! Trisha

Thank you FitnessKellly. I'm going to print your reply out and take it to my appointment with me next week. It sounds very possible. Like most of us, I am very sensitive to any type of medication. I only take .1 of Florinef a day at this point because when they increased it to .2 I stopped my cycle. While I would normally think that is a good thing (lol), I also felt as if I was going to explode. They lowered me back to .1 and it seemed to resolve that issue. I had seen that an irregular period could be a side effect of this medication, but couldn't find anything on the thyroid being effected. Funny that you bring up the Fiberous breast. Never had that problem until about a year ago. I think an Endocrinologist may be my next new doctor! Thanks again!

Has anyone had issues with their TSH numbers drastically increasing while taking Florinef? My numbers have always been fine and have now gone up significantly enough that they want me to take thyroid medication. The only thing that I can attribute it to is that I started taking Florinef 4 months ago. Interested to hear if anyone else has had any issues. Thanks!

I have definitely found that as the temperatures have gone up, my BP has lowered. Be well!

Congratulations on quitting smoking! I know how hard that one is. Be proud and I hope you continue feeling Normal!

Interesting thread. I honestly thought that I was the only one feeling so horrible from this syndrome and yet hasn't quit smoking. Same as many of you - long term smoker who hasn't been able to get this demon off my back. As a smoker who continues to attempt quitting, I guess I see so much more negative with this than positives. I believe that we already don't get enough blood (and therefore oxygen) going through our bodies making all our organs work harder, circulation issues are amplified and the long term shortness of breath is a definite with smoking. I would determine and try ALL other vasoconstricting possibilities before having a cigarette. Also, I have a relative who is a pulmonary disease specialist doctor (who of course wants me to be a non-smoker!). When I told him I was thinking of using the E-cigarette he told me not to. He recommended the patch and gum. This would tell me that the E-cigarette isn't "harmless" and has its own risks. Be well!

Hello Sarah. Not sure if the injections have the same effects as the IV infusions. I had 2 hour IVs once a week for 4 weeks. I was told that I wouldn't notice a difference until at least the 3rd or 4th one because my numbers were pretty low. Unfortunately after the 2nd week I started to feel terrible. It took a few days for me to think about taking my BP (duh) and realized that I was running in the 80s/60s (normally 110/70 and thankfully doesn't vary much). I was told by the nurse and EP that Hypotension can be a side effect (hematologist disagreed). It took about 10 days for my BP to settle down. This was the only problem that I had with it. Not sure what side effects they are concerned about in your case, but I would push to clear up the anemia - let them figure it out when you feel better! Lol. Good luck!

Hi Michele, I can totally relate and have the same questions. I actually have had very few "normal" days since this started 5 years ago when I got sick from EBV (lost 37 pounds in 6 weeks kind of sick). Before the diagnosis of POTS, I thought it was just chronic EBV with some crazy unexplained episodes to go with it. Once I realized I had POTS, I could also figure out most of my triggers for the episodes but not the everyday "unwell" feeling. While my doctor felt it was part of POTS she did continue to test and found that I was severely anemic. I recently had a series of IV iron infusions with B12 and mega D. While this has helped some, I still haven't gotten back to anything I would consider "normal". It is very difficult to figure out what is POTS related and what isn't. I hate to assume that it is all POTS because what if it isn't related and we can do something to fix a different problem that could make us feel better? Craziness. I hope you are feeling better soon! Trisha

Sorry for your troubles. Unfortunately they are well known here. Before I was able to get a diagnosis, I increased my salt and noticed a difference right away (rarely picked up a salt shaker before). I believe the salt and water are my main "helpers". Also, when you are ready to see a doctor again, have them check your vitamins and minerals. Many of us run low on Iron, Ferritin, B12 and D. Lacking in any of these can increase symptoms. I've heard low magnesium can cause headaches, but I'm not sure how that is tested or if this is true. Good luck and be well!

E Soskis - have you had any side effects from the IV Iron? I have been so tired it's hard to keep my eyes open! Not the normal fatigue where it feels like you are lifting a mountain just to stand up, but EXTREMLY sleepy. My Ferritin was a 3, iron 22, my D was 14 and my B was somewhere in range but low. In the last 2 weeks I've had 2 iron IVs, 2 B12 shots and 2 50,000 IU of D. I thought by now I would be full of energy! I'm almost afraid to continue the treatment for the next 2 weeks.

I'll have to check to see if my iodine was tested. Very interesting. I think my doctor checked the main vitamin and mineral levels on me recently but I don't know if that one was included. While my B12 is in the low range, my D and Iron were very low. I had my 2nd IV Iron dose yesterday (2 more in the next 2 weeks) and a second B12 shot. Also taking weekly mega dose of D for 6 weeks and then daily supplements. Hoping to be like the energizer bunny by the end of this!