hilfgirl33

Yes, I totally agree with the food intolerances. I cut wheat and dairy out and the bloating is much better.

I'm enjoying all of these.

Celiac disease/gluten intolerance causes an inability to absorb a lot of nutrients, B12 being one of the more notable ones.

I love it. Should we try more... Pass Out The Salt Passing Out To Stand Praying Our Tachycardia Settles Plethora of Tilt Studies Partially Opposed to Summer Plain Old Tired Sap (sorry, some of these are awful, I know, just couldn't help myself)

My neck is bothersome to me, and I have the same things with my vision. I find it is worse pre-menstrually for me. I go to a doctor who does cranial osteopathy and it relieves a lot of my neck problems.

Sugar in general is an issue for me so I don't touch Gatorade. I would def. be dizzy if I drank that much of any sugary drink. On top of that, I don't do well with chemicals and I believe there are articial dyes and flavorings in Gatorade, except for the Gatorade Ice. I'm pretty sure Poland Springs just came out with a new carbonated water with natural flavorings. My sister in law had one at the pool and it looked like a good water alternative.

I have had a POTS dx for about 5 years now. It is pretty manageable for me at this point, but I am definitely triggered by a lot of things, including some medications and foods. A few weeks ago I had numbness in my left arm that lasted all day and then some intermittent numbness in my right arm over the next couple of days. My doctor wants me to rule out MS and has ordered an MRI with gadolinium. I have no problems with the MRI but I don't want the gadolinium because of fear of a reaction. Anyone else really sensitive to meds/environment with gadolinium experience? Also, my back has been really bothering me so I'm wondering if it is not related to that? Thanks. Elaine

Thank you. I have decided to go gluten light for a while and see how that goes.. I know my body well enough to know it doesn't like any drastic changes. Who knew that eating really well for a week would make me sick. I had one piece of toast this morning and will continue to eat GF for the most part and just include some gluten until I get some more answers from some tests I have not gotten the results of yet. I know the long-term ramifications and I am going to just see how this develops before I decide which way to go. I feel torn, like why make myself bedridden again when I had regained so many freedoms, just to prevent stomach cancer when I am 60. I'd rather have 20 more good years with my kids than 30 more bad ones. That's what I'm thinking now, but that is subject to change.

Well I have been gluten free for 6 days now and I can say my POTS symptoms are definitely acting up. I have read on celiac.com that you can have gluten withdrawal and I'm hoping that is the case. My bowels feel better but my POTS definitely doesn't. If this continues to be the case, I almost would consider going back to gluten on a light basis. For those who had worsening of your POTS, did it go on for long then settle down? Because maybe it was a withdrawal factor that triggered it. Some of the celiac.com people said they had withdrawal for as long as a month to six weeks.

Thanks so much for your input everyone. So I'm gathering for the majority of you it improves how you feel but doesn't solve the POTS problem? Tessa, thanks for the info on Enterolab. I am considering it. I hope that my doctor/insurance will cover it as I don't work much anymore and the budget is tight. I will talk it over with my integrative doctor in a few weeks. Also, In reading about celiac, I thought that you had to be totally gluten free forever to heal your gut and not let it get damaged again. Have you all be told something different? I know it's a hard diet to follow (if not nearly impossible in this day and age).

Nina, I am honored you remember, especially because I know exactly what you mean... Gracie, I see you have leaky gut, how were you diagnosed with that? I just took a intestinal permeability test this morning and I am waiting for DHL to pick it up now to take it to the lab. The drink made me feel terrible for a while, and my face still looks kind of funny from it

Hi! I was a member here a long time ago but haven't posted in a while. I remember a few people's names (hi Nina, remember me? ) I have had POTS for about four and half to five years, but think I've always had some issues through my life. I was really bad at the onset but steadily improved to a semi-functional level. I work part time, take care of kids, keep the house up, just feeling really exhausted four days out of seven. My son was showing signs of fatigued hyperactivity to me (he is 7) and he has asthma and allergies. We ran the gamut of doctors, pulmonologists, allergists etc. I finally tried an integrative doctor for him and then went myself. He feels pretty strongly (as does the nutritionist he referred us to) that we both are gluten and dairy intolerant. Well, I knew we were both dairy intolerant. I just took a test today for something called a leaky gut. And we are going gluten free. The question I have is how many of you are sensitive to foods? Because I have been for years and I thought it was a carbohydrate intolerance but now I really think it is celiac or gluten intolerance. And for those who have gone gluten free, how has it improved your POTS? Were you diagnosed celiac? Because I don't think my body can tolerate the endoscopy/biopsy for that as I have had major problems with anesthesia. Thanks for any input.

Blackwolf, sorry you are feeling so badly. I know, I hate trying new pills, it's just not worth it sometimes!! As far as eating, I lived on tuna and salmon and pb on salty crackers for months when my symptoms were at their worst. One thing that makes me see a notable difference in my symptoms, even now, is salmon. Don't know what it is but for me it's one of those foods that I can digest and I feel really good after eating it.

Thanks. My bowling alley doesn't have disco lights, as far as I know, but I definitely have a hard time with lots of lights. The Christmas lights in the mall drive me insane. I may pop in on a league night and just see how much it is. I hate to join and then not be able to go through with it. I was thinking about the strain of throwing the ball down the alley, too, but since I can rest in between I was thinking it might be okay. My symptoms have been pretty good lately, but that is cyclical for me too.

Was just wondering if anyone has any problems with bowling? I was thinking that this might be a good activity for me to do, not very strenuous, able to sit down a lot - thank God LOL, lots of evening leagues - a better time of the day for me. I do have problems with certain lighting and vision at times. Was wondering if anyone does this or what you do for social entertainment. I mean, bar hopping is out, jogging and going to the gym are out (for me anyway), eating out as a recreational activity is too fattening. Any ideas?

I also feel horrendous around ovulation, my heart goes absolutely crazy. I can predict when I'm ovulating by my palps!!! I feel better for a few days after O, then have about 8 or 9 horrendous days before my period. Thank God I get my period more like every 35 to 40 days, because it does a number and a half on me, so you are not alone!

Wife of Pots, I tried the link for the Mayo Article and it did not work. I am having a disability hearing on Sept 30. Was wondering if you could give me the site if you still have it. THanks a lot!

Good luck on your trip. I hope you feel wonderful and have a wonderful time. You are so brave, a true POTS hero!!

Thanks for the replies. I took him to the pedi the next day and we are getting an EKG done tomorrow, more for the original reason I took him to the allergist. She suggested I not give him the Zyrtec at least until the EKG comes back and see what the cardiologist says. I gave him Claritin tonight and that's the way I think I'll probably keep it. I hate having the fear that this might be something my children have to deal with. I can deal with it myself but I am overly paranoid about my kids having this. Thanks again and I will post when I get the results of the EKG!!

Hi all! I haven't posted in a long time. I've been having lots of personal problems as well as health (allergy related) problems and behavior problems with my 4 yo son - which I think is related to him not feeling well. Well we saw the allergist yesterday and she dx him with allergies of course and probable exercise-induced asthma. I told her about my family history and she suggested that it may be a good idea that he get an EKG. He was having tons of problems on the soccor field on warm days, taking himself out of the game, his face was bright red and he had no stamina. Anyway, she switched him from Claritin to Zyrtec (not the kind with the pseudoephedrine) and I gave it to him at bedtime. I am very nervous about giving my kids meds because of my reaction but they've never had a problem. ANyway, after I gave it to him he got very sleepy - which she said could happen. But a little while after falling asleep he was very restless, then woke up crying. I went and laid down with him and put my arm around him. His heartbeat felt very fast at that time, so I put my hand right on his chest and after a few seconds, it slowed down A LOT. Then a couple of minutes later it sped up a lot again, then did the same thing. I was panicked, thinking the meds caused some type of arrhythmia. I called the pedi right away and was putting on clothes, thinking I would take him over to the ER. ANyway, the pedi called back right away and they were like, Zyrtec does not cause anything like that and if he's sleeping he's fine. I went back in and he had settled and his heartbeat seemed regular at that time. Well, I checked him about 40 more times. This morning I thought that maybe he was having a bad dream and when something scary popped in his head that's why his hr went up so much. Do you think this could be an arrhythmia, or do I just have post traumatic stress? Does anyone else get this nervous giving meds to their kids? BTW, I'm going back to the pedi today to see if I can get the EKG done (don't know if they will think it's necessary)!! Thanks in advance.

Yeah Nina!!! So happy for you, and it sounds like some peace has settled over you momentarily... hope it lasts for a long long time!!

Right back at ya!! Happy Mother's Day to all !

I'm sorry I didn't see this post earlier. My mother who has never officially been diagnosed with POTS but has some symptoms, took a 40 mg doseage of Celexa and was bedridden for 3 days. She didn't go to the hospital because she refuses to go, but she said it was the worst thing she ever felt. I hope with Dr. Grubb's guidance they are seriously looking into med reactions (Not allergic) just sensitivity, because me and my mother are seriously sensitive to things but not allergic and yes I definitely know what she means when she says she can't find her center. My prayers are with you and your family that they figure this out soon and she gets better. BTW, whenever I took meds that aggravated my POTS symptoms severely, even after being off them it took me a long time to recuperate back to my regular state of semi-functional POTS. I hope this helps.

Thanks for the info. Morgan, just wondering how you were diagnosed with the pelvic congestion syndrome? It seems like this is a controversial thing in relation to both pelvic pain and POTS. Thanks for all the info and links... I will post what I find out when I see my first Interventional Radiologist next Monday.

Well, On top of POTS I live with what is becoming almost daily pelvic pain. I have endo and adhesions from prior surgery that was witnessed on my c-section with my son but now I have been dx with something called adenomyosis, an enlarged uterus and a bulging disc at L4-5 per an MRI I just had. My GYN said that the most effective treatment is hysterectomy, with the second being uterine artery embolization and the third being symptomatic treatment with bcp's (yeah, right, can you say palpitations).... Anyway, My cardiologist had told me previously that John Hopkins was doing uterine artery embolization to treat POTS (very controversial though), and in my wildest dream I have hopes that this may cure me. I had asked my GYN about it and she poo-poo'd the idea and since I really am scared literally to death about having surgery again I went with that. I am seeing a uterine artery embolization specialist in consult as soon as I can get an appt. Just wondering if anyone has any info that links these two...or if anyone has similar problems that could link this all to pots? Thanks for any help!!