nmorgen

Hi firewatcher,

I remember you from back in the day, lol. I too have ignored my POTS for the last few years since my family moved back to the US. None of the drs here seem to have a clue and just don't want to be bothered. For several years I actually thought that maybe it had gone away. I was so so wrong. I am far worse than I ever have been. No energy at all, and I'm severely tired now after doing anything. My oldest who just turned 18 is now having symptoms. I wish I could be more upbeat like I was back when I was first diagnosed and getting some help. I was so optimistic then. Now it is honestly just depressing.

Hi Sue1234,

I have been doing okay. I'm not really taking much medication or allergy medicine at this time. I have gained some weight, which hopefully I will lose soon. I have also started swimming. I still occasionally have tachy, but now my heart rate drops low and my oxygen drops low. I am working on my MBA and I really don't have much time anymore.

Hi,

I haven't been to the forum in quite awhile. Is there a backup to the old forum and all of it's posts? It had such great information and I did not think that everything would not be converted over.

Congratulations!

Has anyone used clarinex? I find that it helps me a lot. I also use allegra, tagament(when needed) and nasalcrom.

Hi everyone,

I was wondering if anyone else has experienced low pulses, mine has been dropping into the 30s range(usually when I stand up. Along with this I feel bad, and according to my oximeter my oxygen is dropping into the 80s. I am really getting worried and a lot scared. I don't currently have insurance, and I am in the US right now. I will be flying back to Switzerland in Aug, and I wont have insurance until Sep. Should I try and push the insurance early and get checked out before I go? I just don't know what to do or what this could be. Oh, I haven't been on any medication in over a year.

Thanks in advance for any advice or reassurance

I really, really, really hate POTs and dysautonomia!

Wow, that's great that its really helping. I will try it. I didnt know that any cinnamon cased cancer. I looked up the cinnmaon I have and it's from sri lanka, so I'm pretty sure it's cinnamon not cassia. I also read that it was the cassia(Chinese cinnamon) that was good for insulin stability. Hmm, I guess I'll have to look into that.

Glad your feeling better and have more energy. Is there anything else your doing or just the nut butter and cinnamon?

Natalie

I have the same hot cold flashes. I'm not really the typical age for menopause, but according to Mayo that's what my hormones are telling them. I tend to have most of mine at night. I also get the hot flashes after activity, and I think they are POTs related, and I'm sure the low estrogen doesnt help. Go to your gyn and ask them to test your hormone levels. At least you'll know if it's hormone related or just dys. Also, try to relax when you have them. Sit down get a cool drink and read a book or do something to take your mind off of it. They go away a lot quicker when they are POTs related if you just calm down.

BTW, I haven't been on the forum in several months, and Im glad to see that you and your husband worked things out.

I get the occasional shocks, but not really pain, and thankfully it is very rare. I also use soft unscented toilet paper and unscented feminine products. My skin is really sensitive.

Hi Julie,

I haven't had any test in recent years for EBV, but I had mono almost every year when I was younger.

I read(I'm not sure where, I'll have to find it) that some researchers are thinking that the flu is caused by vit D defficiency. Maybe, our vit D defficiencies are causing the viruses to reactivate in our systems. It seems like almost all of us have very low vit D levels. Whether we are dys POTs or hyper POTs, we all seem to have that in common.

Hi Linda,

Congratulations on the grandbaby! Sorry to hear about your healh decline. I can't give you any answers on the mottling, but I have it myself. It's called Livedo reticularis, and if you have EdS, like most people seem to have on the forum it can cause the mottling. I hope you and your dr can figure out what's wrong and get you better.

Natalie

Sorry your having problems. I have hyper POTs, from my understanding I guess I've had this all of my life. So, I cant really say that there is a difference in orgasm. I do have them, and they vary in intensity anyway. There is a big difference in my energy levels which has changed the frequency of sex. If you are experiencing physical problems as you stated, talk to your dr. Honestly, even if it's a mental thing you should still talk to your dr about. I wish you luck.

Hi Julie,

I think this sounds very interesting. Please keep us updated on what happens with you. If you have good results with talking your dr into testing and maybe trying this I think I will do the same.

Hi,

Well my pulmonary dr did some lung function tests yesterday and she thinks that my asthma isn't being controlled, so my inhaler doses have been upped. She is also sending me to rspiratory therapy to see if that helps. So at this point she thinks it's still my asthma causing the drops in oxygen. I go back in 6 weeks to see if I've had any improvement. I hate asthma. Mine used to not be that bad, but since all the POTs stuff it just seeems to get worse. I'm praying that it goes away. If there are any prayer warriors on the forum can you pray that my asthma goes away or at least gets a lot better? thanks

Chaos,

I was going to mention that if you try to use inhalers after there is a problem, it takes a long time for them to work. They are preventative, and they can help, but not automatically after a flair. They just don't have that capability.

That actually sounds like asthma. That's how it feels when I have an asthma attack. Like you just can't get your breath. Even when you take a deep breath your still not getting that much air. I would see a pulmonary dr and have them test you for ashthma. The POTs like symptoms I get feel like my chest being squeezed and like I've lost my breath, but the not being able to breathe is an asthma attack. When I've been on beta blockers I have had asthma flairs that lasted hours. After that my lungs got so bad it took 2 months to clear up.

Wow! Your friends are lucky if they can't feel it when they eat gluten. I can even tell when I've had cross contamination. I get an instant headache and stomach bloating. That progresses to horrible stomach pain and slowed motility. If I didn't have such severe reactions I probably wouldn't be as nitpicky as I am. I wish I didnt have any reactions.

I've never tried tumeric before other than in curry, but it's worth trying. Would 1/2 tsp be the right dose?

I do have occasiona; problems with over heating, but it usually depends on my level of physical activity. I tend to do ok in heat as long as I can sit down or go inside for a/c periodically. My family usually goes to Disney during the late summer and I don't have any problems. I have always lived in the South and I guess I have built up some heat tolerance. I have noticed since moving to Switzerland that I have problems in the cold. I my pulse tends to drop low(you would think I didnt have POTs at all), but my bp spikes very high. I have been sick almost every 3 months also, from sinus infections, pnuemonia to just colds and chest congestion.

The mucinex is the best thing I have used so far. Everything else seems to dry my sinuses or works for such a short time its not even worth getting the stuff out and heating the water. Mucinex helps with draining the gunk out of my sinuses ans clearing out any congestion that has found it's way into my lungs. Good luck and I hope you get better.

Hi Alicia,

I get muscle twitching and shaky when I try to do physical things like walking too much, going down stairs, or typing too much sometimes. I have been more sensitive to scents lately also. But I get the flushing, hot flash episodes, and it makes my lungs burn. I guess everybody reacts differently to what bothers them.

Hi Godsgal,

The shaking upon physical activity actually sounds like hypoglycemia. A lot of us on the forum have problems with this. Just do a search on hypoglycemia on the forum and you will find a lot of information on what everyone is doing to combat this. Also, from your other post I agree that you should eliminate the gluten. It can be hard at first, but even if you are just sensitive to gluten you will notice a difference in a few weeks. Good luck and I hope you feel better.

Hi Alicia,

DO you take your blood pressure when this happens? I only get the cold sensation and shivering, not really shaking when my bp spikes. I also start to get nauseated. IMO, when you start having any symptoms it's good to check your bp. Honestly, after a while you get used to it, and in most situations you have an idea of what is going on with your body, bp and pulse.

Now the tremors/ body shakes I get aren't associated with cold or hot sensations or anything else for that matter. Everything can be normal(for me anyway) and I can still get these horrible tremors. I havent had them in a while, thank God, and I'm praying I don't ever have them again. Other than dizzies they are the worst symptom for me.

I've had the weird cold sensation before. It wasn't over my entire head, it just felt like a little stream of cold water running down the back of my head. I was also experiencing tingling in my scalp at the same time.

I usually only get the nausea, shaking and tunnel vision when bp is getting high. If it happens again take your bp. It could be dropping or spiking.

Hi Lieze,

My bp fluctuates all of the time. I haven't found anything that keeps it stable. I also feel bad in the morning. I tend to be tired and have more PvCs and just not feel like doing anything. I really don't have an explanation for it, but sleep doesn't seem to give me energy.

Your not alone, and I have no clue how to make it better.

Hi,

Sorry to hear about your chest pain. I also have chest pain, but I was told that mine is Costochondritis. I had my stress test about 6 months ago, and I used the bike instead of treadmill. You may want to ask if they have a bike you could use instead, or as others have said you can do the drug stress test. I have to say it took me a few weeks to fully recover and feel better after the stress test, but its worth knowing that your heart is in shape. Good luck and I hope you get to the bottom of your chest pain.