Roy

If you have never had this symptom before it might be the meds. Throat spasm are one of my symptoms. They were really bad when I first developed pots. I had a difficult time just swalling water. When I ate I had to drink plenty of water prior to doing so followed by small well chewed bites of food. The other day I was having spasms all afternoon. It felt like my throat was closing up on me. It can be a very scary feeling.

I have alwasy been somwhat under weight for my heigth. 6'2" and 185. My weight has fluctuated from 145-165 ever since I have had POTS. I am now at 155 and trying to gain, but it is difficult. My doctors have told me that I need to gain weight my entire life. I agree having to hear 'you are too skinny, you need to gain weight' isn't always the best thing to have to put up with.

Sorry to here about your plight. I am a similar situation myself. Cobra typically lasts from 18-36 months. I had COBRA with my last job and the premium jumped from $50 to $200 per month. I could not afford it at the time, and not even four months later I ended up with POTS. My doctor did see me for a couple of visits, but since I haven't paid in 6 months I no longer have a doctor. I don't know what to do for doctors or scripts now. Maybe panhandling.

Doesn't the swimming cause any of you to get really high tachycardia? I was told not to swim without a lifejacket. Or to just hang off the side of the pool and just kick with my feet. Just thinking of swimming gives me tach.

I get shortness of breath all the time. Even though I have asthma I am not wheezy when I feel out of breath. If I check my peak flow meter or my pulse-oximeter they both always come out normal. I have also had 3 PFT's 4 CT scans and 8? chest xrays in a year and all were normal. Somedays I just seem to be very short of breath and minor things like talking and laughing can make me feel out of breath. The other day I went for a mile walk in the desert and I didn't have any problems other then tachycardia, then, yesterday I was having trouble breathing just from sitting at my computer all day.

I am not working currently. Waiting on my appeals. I worked in a hospital for nearly 2 years. That was about 6 years ago though. And I did get sick alot while I worked there. I seemed to catch every bug that came a long and I always ended up with a respiratory infection. I sometimes wonder if all that exposure weakened/damaged my immune system. A few years later it was a flu with a high fever that was the cause of my POTS.

Don't expect much. I went to one of their docs for the mental problems I said I have that are caused by POTS. The doc just gave me some verbal mental drills then asked me why I couldn't work. I gave him an earfull. Last wendsday I found out that I was denied. If the doctor does ask you why you can't work, give him every single symptom and problem no matter how mild. Good luck!

I see electric blue dots and/or black spots when I stand too fast. When I was on zoloft and calcium channel blockers I used to get them alot worse. I also get them when I am just sitting down.

Any type of unkown growth would worry me. If I were I would have the biopsy no matter how painful.

The nerologist I saw knew I had POTS and did a neuro evaluation. Everything seemed normal to them. I passed without a problem.

The bad thing is it looks like they contain sugar. Which is bad for most POTS people. I was hoping these sachets didn't. http://www.expresschemist.co.uk/product_21...70_DIO118M.html

I had an ablation procedure done, but I had a SA node problem pre-existing to the POTS. They were affriad to any abalting originaly for fear of making the POTS worse, but after a year of my dx my cardio symptoms were getting much worse. My EP decided to do EP study to make sure. Once inside my heart they found a dangerous and life threatening electrical problem with the SA node. After the abaltion my POTS didn't get better or worse. I still get tachycardia of up to 170 bpm when my body needs to and my resting bpm is 65-70 which is normal for me. They were worried about bradycardia fortunately that never happened. My advice get 2 or 3 opinions. If your cardio problems are that bad or getting worse they can always do and EP study to have a look around to make sure nothing is electrically wrong. My study was supposed to be only a half hour ending up being three and a half and saved my life! I think mine is a rare case. People with POTS should'nt be running to there EPs to get ablations as some sort of cure all. Tachycardia is a natual part of POTS and my heart still gets tachy. Some days are just better than others. Hope this posts helps

I flew from Sydney to L.A. I really long flight. The symptoms that were worse for me were fatigue, tachycardia and a some difficulty in breathing. At the time I didn't know about staying hydrated with salt and water. It might have been easier on me if I had.

I have taken prednisone for asthma since I have had POTS too. At around 40mg and I never noticed it helping me for POTS. Hopefully it might just work for you.

Thanks for all the replies. My allergies finally cleared up on their own. These pine trees with all their yellow pollen was really getting to me. Luckily 2 days of wind have blown alot of it away. Now I'm back to my normal POTSy self.

I think most people get denied their first time. From what I have heard it looks like SSDI is doing this with alot of cases not just POTS. My brother who has autism was denied on his first try and he has a whole lifes time of proof of disability. 90% of the people in his support group have also been denied on their first try. My stepmothers friend is a social worker and she sai that most SSDI claims are being rejected on the first try because of alot of apply and don't really need it, but god knows us POTS people really do need it. I am worried that I will also be denied SSDI for POTS. I was recently sent a letter stating that my case has been reviewed and that I need to see one of their appointed doctors for "mental problems". As part of my application I listed all of the mental probelms POTS causes me. Now their sending me to a shrink! lol, for further evaluation. Maybe I'll get SSDI becuase they think I'm crazy? I'll still take it! In the end don't give up. Alot of us are going thru the same problems. Good luck and hang in there.

If it is the deoderant your not alone. I noticed a couple of years ago that when I used spary on deoderant I would get sharp pains in my arm pits. So I switched to a unsented gel deoderant. I don't get any pain from it unless I have to apply it more than once a day. Even then the pain isn't as bad as the spary on variety. Scented types seem to cause more pain as well. I guess our bodies are just overly sensitive to these chemicals.

Is there anything I can take for my allergies that won't worsen my POTS symptoms? I have had POTS for 2 years now and my allergies have never been as bad as this so I have never had to worry about taking anything. I asked my allergist, but he isn't sure what to make me. My EP who really isn't a POTS expert has a gung ho just go ahead and see what happens approach about taking antihistamines. Since it's my health I would rather not. Any suggestions?

1. Roy-alias 2. 31 3. POTS and overlapping IST (ectopic sites ablated) 4. DX'd 29 5. Las Vegas NV 6. fatigue, tachycardia when standing, poor stamina, mild sweats and chills, mild headaches and nausea, IBS- ocassionally, over stimulated easily, stress, memory/thinking trouble, insomnia, mood swings, palps, constant thirst, visual disturbances, heaviness/numbness in legs and arms, 7. At my best I will only have the fatige mild tachycardia when standing and the mental problems. 8. Zoloft, Paxil, cardizem, digoxin 9. midodrine, ativan, lots of water, mineral complex, salt. Meditating 3-4 days has really helped me alot with energy and memroy problems, walking everyday if symptoms allow, doing tricep dips on a workout bench has helped to build my upper body some and doing leg lifts on the floor has toned my legs up. I will be going to the gym soon to start a mild workout program and increase it as tolerated. Also, acceptng my illness has helped me cope with POTS as well as trying to stay positive.

When I first started out on midodrine I had the scalp crawling sensation for a couple of days. It ended up going away. Midodrine has helped me out alot. If I skip one day I feel awful. I wish I could a standing order for IV fluids too! I feel so much better after having them. It would be a real life saver to be able to do it from home.

I don't know if oxygen depivation has anything to do with symptoms or not. I don't think so, but this is just my uneducated guess. I have a pulse oximeter that I check my heart rate and oxygen levels with daily. Mine runs between 96-99% oxygen saturation. Which is normal for my age. I have noticed on days I can have O2 levels of 99% and I feel terrible. Other days O2 levels can be lower at 96% and I can feel great. I tested out this idea one day while visiting my grandfather who is dependant on oxygen. I took one of his O2 tanks and spent several hours on it. I didn't seem to notice any difference at all. I often wonder why we are so allergic to sugar. Sugar is energy. It would seem to be of a benifit. Some days I can feel just awful from eating just one or two cookies. Yesterday I ate two Oreo ice cream sandwichs and it didn't bother me a bit.

I pop a handful of vitamnis every day becuase of my poor diet. The two that help the most by themselves is QCo10 and a B complex. They dont do much for all the pots symptoms, but they help with energy and mental clarity.

Since POTS I haven't been able to take any pain relievers they all make my symtoms worse. It makes me feel like I ate a bag of sugar. If I have any aches or pains I just live with it. Its not worth taking anything and feeling like a zombie the rest of the day.

Are SSRI's actually supposed to help with sleep? I was on Zoloft for awhile and not only did it not help me sleep it gave me nightmares. When I was on Paxil it didn't seem to help me sleep either. I guess I'm lucky. When I do fall asleep generallly around 2-4 am I stay that way. I don't wake up a hundreds times a night like some poor souls do. Now I use benzos or stay up alnight and sleep my day away.

I can't do any aerobic excercise. my HR goes to 185+ which doesn't bother me so much it is the palps that stop me in my tracks. if i start doing anything remotely aerobic my heart tachs out then i start gettting really bad palps back to back. if i lay down to slow my heart rate my heart rates suddenly drops down into the 50's with palps and what feels like skipped beats. my doctor claims that this is ok, but it doesn't feel ok.