bella27

Kits, I would be careful with adderall. I know it seems like it temporarily gives your brain an extra boost but it causes so much stress to the heart. Actually, I am pretty sure adderall is what caused my POTS in the first place. I was on it for five years and the last few years my heart would not calm down, and I've had tachycardia and POTS ever since.

Adderall opens up a whole new world. I was on Provigil, but it wasn't as good. Adderall is fantastic!

My next cat is either going to be named Egg Nog or Adderall. I can't decide which.

Kits

I have had 3 very extensive jaw surgeries and, looking back, I am pretty sure that my POTs symptoms began directly after my first surgery, when I was 15. I had been on way too much adderall at the time for wrongly diagnosed ADD and have always solely attributed my POTS symptoms to that. I am wondering now if having so much adderall in my system COMBINED with all the blood loss from surgery may have contributed to the onset of my POTS. Did anyone else first notice their POTS symptoms directly after a surgery? I am probably getting carried away here but maybe I lost too much blood during the surgery and need a blood transfusion? Also, did anyone else take high doses of adderall for a long period of time? I still kinda suspect adderall is the main culprit...

I tried posting this question before but couldnt find my post the next day so I don't think it went through...sorry if it did though and I'm double posting...

Anyways, my non-Pots friends suggested I do headstands every night and every morning to get blood to my brain. I've been trying this for a week and it seems to be really helping, though I'm wondering if its just the placebo effect. Has anyone else tried this? I'd love to know if its worked for other people so that I know its not just in my head (no pun intended).

Also, I saw another thread about how bending over (which I assume would have a similar effect to headstands) is actually bad for POTS. I thought this was strange since POTS patients have a lack of blood to the brain so shouldn't bending over give us the extra boost of blood we need? One woman said that the reason why its bad for POTS is because the blood is not oxygenated? Can someone please explain? Also, would this be the same deal with headstands?

Thank you for reading!

Rachel

But isn't this a good thing? I thought part of the problem with POTS is that we don't get enough blood to our brain. So when we get too much, isn't that good?

Hi Niki,

I started getting POTS after taking antibiotics for about a year and had never had POTS before. Now, five years after I stopped taking the antibiotics, the POTS remained. I also started taking adderall though at the same time as the antibiotics so I had always figured the adderall/antibiotic combination kind of messed me up for life. The two drugs together sped my heartrate up to sky-scraping heights.

ok im starting to wonder somthing....remember how i said i always have uti infecctions well for years before the pots i had this and took ample anti biotics can antibiotics cause dysautomia? i mean it seems plausible right? and if so can it be reversed......and what about immune dyfsensy? i never use to eat right for like 2 years straight and thats when i had utis all the time

haha thanks for the insight!

Bella / Rachel,

it is interesting that you find your POTS even worse after removing stockings. I don't have any actual information on this and no real personal experience. If I am wearing my stockings I don't take them off until the last minute before climbing into bed. If I do take them off earlier it is right before getting into a bath - baths always make me feel potsy afterwards so difficult to compare.

I guess that your body gets used to the compensated increase in venous return from the stockings during the day. When you take the stockings off you may be getting a sudden displacement of a lot of blood volume downwards into your legs - bad venous pooling. That could give you a sudden increase in severe POTS symptoms. I think that our bodies get used to one state / condition and any sudden changes are not good for our symptoms.

Have you tried leaving your stockings on until you are ready to get into bed? I have got quite good at throwing them into the laundry bag from the bed - my aim is getting better too!

Flop

This makes me so nervous. I have been feeling a bit dizzier than normal when I wear my compression stockings and I just told myself that I was probably getting dizzy b/c I was getting TOO much blood to the brain! I told myself this is a good thing, that it meant they were working! I had no idea that the stockings could actually be making me feel worse. Its weird because I was speaking more clearly than usual today and my heart wasn't racing as fast as it usually does, but, at the same time, I was feeling a lot dizzier than normal. Could the stockings be relieving some POTS symptoms while exacerbating others? This is all so confusing...

Yeah, bunching can be bad. Esp. if you already have bad return blood flow etc. You are at risk if constricting the flow of blood more, instead of encouraging it to return to the heart. You can also then be at greater risk of DVT and dermatological issues (like pressure ulcer type of thing) because you are concentrating all that pressure on one area.

So, watch the compression hose and periodically smooth it out to decrease additional problems.

Flop,

I understand why POTS symptoms flare up again when you take compression stockings off. But, what happens with me is that when I take my stockings off, my POTS symptoms are worse than they would be had I not worn stockings all day. Does that make sense? Shouldn't it just go back to how it would be without the stockings?

Best,

Rachel

Linda,

If you don't wear your stockings do your legs swell during the day? Gravity causes any swelling to go to your feet whilst you are standing or sitting during the day, when you lie down overnight the swelling "goes" as it drains away from your feet as gravity is no longer pulling it towards your feet.

Usually stockings help to keep your blood pressure up by squeezing blood from the legs back up towards the heart. When standing without stockings you probably get pooling of blood in your leg veins, this means that there is less blood getting back to the heart and therefore less blood being pumped out of the heart. To try to increase the amount of blood the heart pumps out it starts to beat faster and race, eventually this can lead to a blackout.

Hope that makes sense?

Flop

Oooo what happens if they bunch up? Its dangerous???

Welcome to Glamour!! (You have to say it like its the 1950's)

Being fitted is the only way to go. Otherwise you can end up with tight bunching and from what I understand, that is dangerous!

The pair will cost around $100, or custom for $150. My custom ones beat the others 10 to 1. Home health is the source for these and they usually have a few different types and colors (I have an old pair that I'm going to try dying dark blue this weekend. I know...WILD!!)

Also, if you have problems with elastic allergy like I do and your thighs become raw, or abraised or whatever- Target has some WONDERFUL exercise shorts that can be worn either over or as underwear. I get the mens thin and tight black ones that go down to just above the knee. (you know- the ones that you see on the side of the road on the bicyclists with the extremely tight and very distracting pdonkadonks?) And- they are fabulous because if you are self secure, or live alone- they are great to sleep in during the summer. You have to get these relatively tight though so that they won't bunch up under the hose. Make it work though, because hose can be a great improvement.

Like I said, Welcome to Glamour!!!

Has anyone tried the BCP Yaz to help with POTS symptoms?? Any luck? I heard the BCP Yazmin (which is different from Yaz) actually hurts POTS because its a diuretic? I was wondering if it might be the same deal with Yaz...

Lisa, Do you take Yasmin to help with POTS or for something else? If for POTS, has it helped at all? I'm starting it next week...

H

Flop,

I'm on Yasmin and really like it. I had tried other meds before that made me feel crazy (emotional). I haven't had any side effects from Yasmin which is great. It does lessen the duration/intensity of my period as well.

I'm not sure if I've answered your question or not.

Talk to you later,

Lisa

Has anyone kept a food journal and noticed that they feel better/worse after eating certain foods? I feel like meat might be making me more tired and dizzy but it could all be in my head.

I have normal blood volume and the docs tell me to keep salt and fluid loading. I laughed at them and asked them why when I'm normal volume? they said that in people with pots, a lot of people pool blood so much that the body literally "senses" this pooling that occurs almost as a literal ''blood loss'' -- it would be the same reaction in someone who truly is hypovolemic from blood loss say from a major cut to the leg.....

so when we salt and water load, it increases volume, whether normal or low to start with, and so it decreases the effects that occur from the blood pooling in the lower limbs, with what the body senses as "low blood volume" or a hypovolemic state when people pool.

this is how it was explained to me as to the reasoning for continued water/salt loading in pots patients with normal volume.

Thats very interesting Angela. Thanks for passing along the info.

I just got my blood volume test results back and they came back normal. So I guess everything I have been doing that I thought was kinda/sorda helping with my POTS symptoms like salt tablets and 3945809 glasses of water a day were only having a placebo effect and were not really helping??

I was wondering if anyone else has normal blood volume levels and what treatment methods have worked for them? Also, does anyone know of any other things that may cause POTS besides low blood volume. My doctor said that if its not low blood volume, he has no idea what it could be...

I definately get this too! To me, it is the most frustrating thing about POTS. Talking used to be my favorite activity and I used to be a very eloquent speaker. Now speaking is such a struggle...I don't have enough breath to get the words out, my voice feels weak, I constantly feel like I'm straining my vocal chords, my verbal memory is all messed up etc.

Does anyone know of anything I can do to help relieve some of these symptoms??

Hi Susan,

Have you tried meetup.com. They have clubs for almost everything for almost every city and its free! So theres no pressure to attend every week if you don't feel up to it. Just thought I'd throw that out there.

Best,

Rachel

Hi Beth,

I've never heard of anyone taking cranberry tablets before. What symptom do they relieve?

Thanks!

R

Hi,

I wanted to do an informal survey on everyone's favorite meds taken thus far for POTS. Also, would you mind including a brief description of how it helped and what side effects occurred, if any.

Thanks!

Rachel