Ashelton80

I answered 5-9, but I actually only have one left. I had then all changed(except one) out by a holistic dentist about 8-9 years ago. My POTS started almost 5 years ago. So, I can't say that having them CAUSED my POTS, and can't say removing them helped my health. Now, who knows if what they put in as a replacement filling didn't contributed to my POTS??? I just don't know.

Thanks so much for sharing your experience sue1234. It is so hard to know what things are or are not contributing to this frustrasting condition. I am on the fence as to whether or not I think they are doing any harm. On one hand I would love to have them out regardless, on the other I am afraid if it isn't contributing to POTS then it will end up just making me sicker for a while. I had the same scenario with my wisdom teeth last summer. They were impacted and starting to get infected and I thought for sure that would help my symptoms once they were out, but no dice. Now am I better off with them out, of course, but didn't help POTS stuff at all. I do know that it is important to your overall health to take care of your mouth though. So I guess we shall see.

I am having my 2 amalgam fillings removed next month. Just wanted to see if anyone has them or has had them and had them removed. I am having them removed by a certified holistic dentist that takes all the extra pre-cautions for extracting them and minimizing exposure to mercury vapors. I don't know whether or not they are contributing to my health decline, but either way they are very old and ugly so they need to come out anyway.

I read a lot of stuff online about dysautonomia and exercise. Lots of people say when they stay active and exercise regularly, they feel a bit better. With me I always seem to feel a lot worse a few days later. Now, I have a lot of bad days..More bad than good - so I don't know if it's just my normal bad symptoms coming back or if exercise brought it on. Just last week, I was feeling a bit better so I did some cardio, salsa 20 minute dance video. The next day I just did exercises on my own, especially squats and stuff to try and build my leg muscles more. On the 3rd day I still did some exercise but towards the end of the day I was starting to feel funny. I can kind of tell when my symptoms are starting to come back after having a few days of feeling good. So far this week I've just felt so horrible..Very dizzy and vertigo-ish from time to time and just plain exhausted. Does anyone get like this after they exercise or could it just be my normally dizziness and such coming back? :-/

On my good days people tell me to just do other things I want to do and not worry about exercise since it always seems to do me in anyway..But I used to LOVE working out years ago. I usually did cardio for an hour every single day, sometimes more..I feel bad about laying around most of the time but I'm really too dizzy to do much of anything..and I'm just trying to figure out when I should just keep pushing or when my body really does need rest.

Any advice would be greatly appreciated.

Supposedly it's better to do your exercise sitting down or being horizonta like swimming, recumbent bike, etcl. The exercises you mentioned are all vertical and are probably too taxing on your cardiovascular system if you are just starting back at it.

If ibuprofen decreases prostaglandin production, and Prostaglandins are vasodilators, does that make it a vasoconstrictor? Ibuprofen has a warning that it can raise blood pressure which is probably why it helps me.

The Mayo doctor told me to take a small dose before exercise. I was telling her walking made me dizzy so I wasn't walking very much, and she told me I needed to "retrain" my body to being upright and I should walk as much as I possible and that the Ibuprofen should help me walk longer. She didn't put any limits how long or how often I should take it. It worked for me.

I find that Ibuprofen often helps me when I feel dizzier than usual. This is useful if I have somewhere I want to go.

Thanks Jan! It is so crazy, but it's day 4 and I have definitely felt better and been able to function more and earlier in the morning! I will take it!

I have read that Ibuprofen is a vasoconstrictor. The Mayo clinic told me to take an Ibuprofen before exercise because of that.

Well now I'm confused. LOL Did Mayo tell you the reasoning behind taking it? Did they give you a limit for how long or how often? Very interesting as this is the first time I've heard any talk of advil, but if Mayo is suggesting it then maybe it's not such an "unknown" thing. thanks

I have a very different theory about Advil. It also helps my son. Ibuprofen is a vasodilator http://en.wikipedia.org/wiki/Ibuprofen. I have reason to believe that my son is vasoconstricted - that he has "low flow" POTS - and I think the Advil helps his blood circulate better because it opens up his arteries and blood vessels. Sadly, it's not a good thing for your GI system to take in sufficient doses every day. Simply taking one Advil a day does not help him - he needs a larger dose.

Thank you for your response!! I never thought of it in that aspect. I was only thinking in inflammation terms, but that would make sense as well. I just always thought I needed more constriction since when I get out in the heat (which is a vasodilator) I get VERY symptomatic and my heartrate will skyrocket. As soon as I jump in the pool and my legs cool off my heartrate will come down immediately. Maybe it is a less drastic vasodilation action with the advil versus the heat and that is why I was handling it well. Interesting! I know it's not a long term solution, but I could use it for a bit to try and get some things accomplished. I was getting this benefit with a very low dose of 200 mg every 10 hours or so. Probably because I only weigh about 113 pounds and I rarely take pain relievers. Thanks for your help!!!

Hi all, I am on the tail end of a really bad cold/flu virus not sure which one. All I know is I was writhing in aches/pain, high fever, congestion and a really sore throat. All I could think to take was Advil to try and get my fever down since my resting heartrate was 110. My resting rate has never been that high before. I took the ibuprofen for 3 days and although I felt bad with the "sickness" part of it, my POTS symptoms were much better. Strange? The first thing was the chest pain was gone. Now this makes sense to me because advil is an anti-inflammatory and I'm sure my sharp chest pain is probably costochronditis and chest wall inflammation. It also seem to calm down my shortness of breath and "air hunger". Not sure the mechanism behind this one. Any ideas?

Has anyone else experienced this? Could this just be systemic inflammation? I know when I have taken stuff like cell food, greens first and monavie these have all helped as well. They are all anti-oxidant/anti-inflammation type products. They take longer to notice a difference, but the advil I noticed right away. Maybe I'll pop an advil everyday if it helps and hope my stomach can tolerate it.

Go read potsrecovery.com. She just posted a new one yesterday. You can read starting from January when she was really sick to now. She is living a normal life. Personally, I don't put my all of my hope in drugs. If I did I wouldn't have any hope left. They have mostly been huge failures. I am starting the protocol tomorrow. Good luck!

I have had some of THE worst reactions from massages and especially ones that massage my neck. But I've also had an accupressure massage that sent me into a crash that lasted 2 months. My husband is a chiro, but can no longer work on me because of the POTS and how sensitive I am. I have to go see a specialized chiro called and atlas orthogonal chiro. They are more specific and use an instrument the size of an ink pen. It has given me a lot of relief from both pain and POTS stuff, but I have to drive a long way to see him.

First off, I need to say MY NODULES WERE BENIGN AND MY THYROID WAS NORMAL!!!! I was so worried and every time a possible cancer diagnosis pops up I get a little bit more scared

What conservative methods have you tried? Chiropractic and Decompression would be the first two that come to mind. Surgery would be my absolute very last option after everything else available completely failed, especially at 23 years old.

Please, don't get me started on the quackery that is chiropractic "medicine" ... Sorry, sort of a sore subject for me I've known too many shisters and snake oil salesmen, as well as people who have been PERMANENTLY injured (as in now quads moving around with a breathing tube) due to chiropractic manipulation.

As far as conservative therapy...

I have had 3 months of physical therapy, including manual therapy (NOT THE SAME AS A CHIROPRACTOR, MANUAL THERAPISTS ARE REAL MEDICAL PROFESSIONALS) with muscle release, nerve release, stretching, strengthening, and time in the gym. Also, I have had FOUR-FIVE+ epidural steroid injections this year, none of which have helped the pain at all.

I have REALLY avoided ANY sort of surgery, but this herniation is bad enough that I really NEED a microdiscectomy to relieve the nerve compression and hopefully get rid of my leg, hip, and butt pain, as well as bit of my back pain in the process.

This is not some magic bullet that will cure everything, but this is a small step and a small operation to fix a structural problem and see from there how my symptoms and pain level change. I have put off surgery for 10 months, it is time and I CANNOT and will not live wit this level of pain any longer.

e telling me will happen! Thanks so much for your thoughts.

That's a shame. Have you personally been to one and had a bad experience? There are definitely "quacks" in all profession as I've seen quite a few in conventional medicine as well. I would be careful blanketing an entire profession. Either way, I have been helped tremendously as have countless other people by chiropractors. I have been seeing one for 10 years and married one 4 years ago. I won't take your outlandish and careless comments personally though. Actually, an atlas orthogonal chiro (not my husband) along with salt and fluids has been the ONLY thing to give me relief from my POTS symptoms and pain that goes along with it.

Good luck with your surgery.

I was exactly like you are describing for weeks at a time prior to my diagnoses. And I was actually like this to some extent while on a beta blocker and when I tried an ssri. How long have you been on it? Why are you on it? As my electrophysiologist told me yesterday, in POTS if you block the hearts ability to compensate for whatever it's compensating for (ie low blood volume, loose blood vessels) then some will have problems like I did. Do you think you have low blood volume? This will always trigger adrenaline surges in me if I haven't salt and fluid loaded properly in several days. As will not sleeping, overdoing it physically, etc. Your body and especially your nervous system is not something you can manipulate into doing what you want it to do right this very moment. Also, have you had your thyroid checked? I'm not familiar with much of that, but i do know my sister in law is hypothyroid and she has the feeling of having a heart attack.

I am just a little confused at what your diagnoses is? It's obvious your body is screaming for help. I know it's normal to just want to find something really quickly to make it go away, but maybe try to dig a little deeper and try to figure out what is going on. If all of your tests are coming back normal look at lifestyle stuff? What am I eating, drinking, how am I sleeping? Vitamin D levels, b12 levels, am I anemic and on and on? I tried the whole counselor route before thinking it was some unresolved emotional issues I didn't know about, but nope it was all physiological. My nervous system is just out of whack for some reason. Here are the things I do when my body is freaking out similar to you....

salt and fluid load

rest, rest, and more rest and then some more rest

eat low carb, high protein healthy meals every 2 hours (blood sugar problems feel the same as panic attacks for me)

visit my atlas orthogonal chiro (i can't explain it, but if my neck gets out of whack depression and pots stuff is so much worse)

try to get in the early morning or late evening sun 15 minutes a day

my body will calm down, it usually takes several days and sometimes weeks before i knew how to help myself...sorry you are having a rough time...i've been there

What conservative methods have you tried? Chiropractic and Decompression would be the first two that come to mind. Surgery would be my absolute very last option after everything else available completely failed, especially at 23 years old.

HI Justin,

This can all be so overwhelming for not only us, but for the people around us. My marriage and friendships have suffered greatly as well. First of all I would encourage you to first take a deep breath and try to concentrate on one thing at a time. Try to figure out what your worst symptom is. I also had trouble with anxiety/panic attacks, but now know they were just adrenaline surges to try and constrict to keep my bp up when it was dropping due to low blood volume. This may or may not be the case for you. So I guess that makes me wonder why you are still drinking coffee?? That was one of the first things I had to give up because of the horrible wired anxious feeling I had after I drank it. My body gets really revved up and it can take a lot of TLC to get it to calm back down. The point is that it WILL calm down. Anti depressants were horrible for me as well. Try to focus on eating well (not a bunch of junk) drinking, resting and sleep. When I get overwhelmed I just try to find a starting point or something that I can do today! One of my starting points is lots and lots and lots of fluids and salt. Lots of V8 juice and chicken broth and around 3 liters of water. This takes a few days to build up, but it will usually calm things down for me fairly quickly. Then I will slip on my compressions and that will help a tiny bit more. Then I try to figure out what vitamins/minerals I may be deficient in and I add those in. I haven't been happy with my current doctor so I found a new one. Tomorrow I see him and maybe try a new med or maybe not. I have some other things in the works as well. All this to say is that you have to keep the main thing the main thing. I know when I get so out of sorts I lose focus and tend to do nothing. And that is only hurting me! It's all just a big puzzle that I believe has to be put back in layers. This is such a difficult condition to deal with every minute of every day. It is often traveled through alone and with very little understanding or support even from the ones who are the closest to us. I have and still am experiencing all of that. Maybe encourage your wife to read some material online about it. I know that helped tremendously with some of my family that wasn't supportive and sensitive at first, but now are just having the knowledge of how difficult this can all be. Hoping you find some encouragement and comfort from this forum.

Ashley

Ashelton,

If you are starting Dr. Levine's protocol, the beta blockers are not allowed to do the study. Only a physician with POTS knowledge can determine whether you are hyperadrenergic. Many POTS patients have higher levels of upright adrenaline, but it does not always mean they fit into the hyperadrenergic category according to the Vanderbilt review.

Issie,

I once had an infusion of albumin and saline to hold the fluid in my vessels longer. It made me feel much better at the time. I have little knowledge of intricacies of CHF and EDS. I only know the mechanisms of the drugs and the POTS research and review articles pertaining to medications. Sometimes drugs that seem counterproductive actually help patients. Also, drugs in various combinations help people. One drug may be a vasoconstrictor and another a beta blocker. Only a physician has the patient experience with prescribing and dosing, and only you know whether a medication is making a difference in the way you feel.

Oh yes I know I can't have it during the protocol. I guess I'm just always thinking ahead with the what ifs. What if I can't complete the protocol, what if it just makes me worse, what if it just doesn't work for me. Ugh. I know that's not good, but it seems everything I have tried has been futile so I just expect things not to work out in my favor now. . Thanks for the info

I took propranolol for a week and it made my bp higher than normal as well. I don't think it was when it was worn off though. I chopped it up to the fact that since it was keeping my heartrate from being elevated then my body had to manage and keep me upright somehow, so it would raise bp. This is probably a good thing for some, but for me it made me feel worse. I have POTS and I can walk around for the most part without feeling like I'm going to pass out. When I was on propranolol I felt like I would pass out and vomit at the same time. My heartrate was nice and low and my chest pain was gone though. :/ I lasted a week on it before deciding it wasn't for me.

If the heart rate is low and the blood pressure is high on propranolol, it could be from unopposed alpha receptor stimulation or beta 2 antagonism from a non-selective beta blocker. For example in pheochromocytoma (a high adrenaline state from a tumor), pure beta blockers are contraindicated due to unopposed alpha stimulation. Alpha receptors on blood vessels cause constriction when stimulated. POTS patients can often produce high levels of adrenaline. It's interesting, but I notice Dr. Grubb mentions using Labaetalol or Coreg in hyperadrenergic POTS patients. He doesn't specifically mention other beta blockers in his review article. These are mixed beta/ alpha agonists. Even patients not on any medication may when heart rate is lower, blood pressure is higher.

So, should I try a selective beta blocker? Would that do anything different ? This is all a little over my head. . Are u saying the extra constriction is counterproductive for me. I'm not sure if I am hyperadrenergic, but feel as though I might be. I have often told my husband that it feels like I have too much adrenaline release. Thanks for your response!

I have said this at least a hundred times. I WISH this were just an issue of standing up! It is sooooo much more complicated than that. If it were I would just mosey around in my little wheelchair or get a scooter and LIVE! I tried to go to the pumpkin patch yesterday with my hubby and 3 yr old little girl. Something that should be fun and exciting and it was a nightmare. I sat in my wheelchair the whole time and my heart rate never exceeded 92 bpm and that was only when my hubby parked me right in the sun and left me there for a few, the rest of the time I was beating quietly at 70 bpm. Tons of kids, moms casing said kids and a bumpy ride through a farm that was not handicap accessible and I just lost it! I thought getting out and at least doing something normal would make me feel better! It didn't! I felt WORSE! And then I get pissed off because I can't do something so simple! It's like my brain can't process what's going on around me. This is coming from a person who used to throw parties with the attitude "more the merrier"! I got back in the car and just cried my eyes out. For the rest of the day I was done. Couldn't think straight, couldn't see and was exhausted. Ended up going to bed at 8 pm and I still feel like crap today. This has got to be one of the cruelest conditions. Sorry for the rant, but I feel like the neurological part of POTS is harder to understand than just " oh well when I stand up my bp drops and my heart rate goes nuts and I might pass out". People get that, they don't get the other. This *****!

I took propranolol for a week and it made my bp higher than normal as well. I don't think it was when it was worn off though. I chopped it up to the fact that since it was keeping my heartrate from being elevated then my body had to manage and keep me upright somehow, so it would raise bp. This is probably a good thing for some, but for me it made me feel worse. I have POTS and I can walk around for the most part without feeling like I'm going to pass out. When I was on propranolol I felt like I would pass out and vomit at the same time. My heartrate was nice and low and my chest pain was gone though. :/ I lasted a week on it before deciding it wasn't for me.

He developed the protocol based off of Nasa's program to recondition astronauts when they return to gravity from being in space. Apparently they have orthostatic intolerance when they return. I'm not sure what all the details are, but basically they take your 10 minute stand test results and develop target heart rate zones while exercising. All of the exercises at first are sitting using a recumbent bike or a rower. It also includes weight training. I think during the third month you move up to standing exercises such as treadmill or eliptical. It reconditions the body and builds low blood volume. Now, I absolutely do not think I have POTS because I am deconditioned, but I am definitely deconditioned because I have POTS. I have been bed bound for 2-3 months at a time a few times over the last 18 months. My once muscular calves are completely gone. Absolutely no tone in them or my quads any more. So, for me I am going for a layering effect to my recovery. First, tons of salt (6-8,000 mg) a day from food sources (no tablets for me). Very healthy diet, compression stockings and atlas orthogonal chiropractor. All of these have made a big difference, but I am still limited. I am taking Vitamin C for my adrenals and adding in b12 shots today. Probably add in Vit D and tanning bed once or twice a week and then I will start the exercise in 2 weeks. That's my plan for now. I'll let you know how it works

Hi, just wanted to let you guys know I qualified for Dr. Levine's exercise protocol. She said I should receive it next week. I will probably start in 2 weeks. I'll try and keep updated and let you all know how it's going. I am really nervous about the whole thing!

I noticed your post said "Dr.Levine". Would this be Dr. Benjamin Levine? If it is, has anyone seen this dr. before? I am currently waiting to be seen by him in Dallas, Texas. Just waiting my turn you could say. Any info about him would greatly be appreciated as I don't know what to expect once I do get in to see him.

Thanks!

Hi,

I haven't seen him personally. I am just applying to be a part of the study he is doing on the exercise protocol for POTS patients. I have no idea how he is as a doctor. How long are you having to wait? I wish I could go and stay in Dallas for the duration of the protocol, but I have a husband and a small child so it's just not possible. Let us know how your appointment goes and if he suggests things other than the exercise or not.

I know this has been mentioned on the forum before. Does anyone know someone that has tried this? Where are the people that are well because I want to talk to them . Surely at least one person is on this forum that has participated. Right?

I now drive 4 hours to see an Atlas Orthogonal chiro. I had AMAZING results with this. It is a very specific and you are adjusted by an instrument that is the size of an ink pen. I honestly couldn't believe that something so gentle (you barely feel it) worked so well with my POTS symptoms. I walked around an entire week with heartrates in the 70's. That hasn't happened in well over a year. So, my suggestion would be to just use a different technique because yes anything too "forceful" can have a negative impact on me. I had a very intense accupressure massage and had one of the biggest crashes I have experienced afterwards.

See if you can find an Atlas Orthogonal chiro anywhere near you. They are very hard to find as not many practice this technique. Hence the reason we drive 4 hours.

Good luck and hope you get to feeling better.

Do you know anything about chiros that practice nucca techniques ? Nat'l Upper Cervical Chiropractor Assoc They had a remarkable study on blood pressure.

Years ago, when I was facilitating the local pain group, I had an atlas chiro in for a presentation. I really don't understand the differences between these techniques.

I am very leery of anyone touching my neck yet have pretty much constant pain from it.

Reen sorry it has taken me so long to respond. They are very similar techniques. The only difference is that atlas orthogonal uses an instrument and NUCCA tends to use their hands. I have been adjusted by a NUCCA dr once and I didn't think it did a thing. The first time I was adjusted by an atlas orthogonal dr I could feel immediately a difference. I think the nucca doc was new and he didn't palpate my neck before and after. He only checked my feet so I had no clue whether or not it did anything. But as far as the difference they both take the same extensive xrays, do leg checks and are very very light and non invasive. You basically don't feel either one. Just like everything else what technique works for one might not work for another. I just so happen to have great results with AO. It was also a difference in experience where the nucca doc had 2 yrs versus the AO doc having 50 yrs.

My neck is in constant pain as well and my atlas is rotated down and to the left. When he found my listing and adjusted (took a couple of visits to find right one) but when he did I can't tell you how much nerve pressure was relieved. It is really amazing. I just wish I could get down there more often. I am actually in quite a bit of pain at the moment and my POTS has been bad lately.

I have never been a good sleeper, but since my dysautonomia issues have gotten severe I can barely sleep. I have trouble falling asleep, take Benadryl and usually end up going to sleep around 1 or 1:30. Then, 3-4 hours after I fall asleep I wake up sweaty, feeling terrible - short of breath, heart racing and pounding, nauseaous - and then usually have urgent diarrhea. Can anyone tell me why this is happening and if there is anything I could do to get more sleep? I often can't go back to sleep after these episodes, or like this morning I fall back to sleep and then wake feeling like this several more times before I have to get up to try to get my kids to school (all I can do in the mornings now is sit on the couch and try to supervise their morning routine without being too miserable). My mom thinks that my sleep/night problems may be caused by blood pooling while I am still, which leads to - what? A drop in bp? Is this episode similar to what people describe as an "adrenaline surge"? I'd really appreciate any insights and suggestions you might have - thanks.

Hey Sarah,

What time do you take your meds? I know Florinef and Midodrine can both cause sleep disturbances, but I have also had this just be a part of my POTS when it is at it's worst. And yes this is what I would describe as an adrenaline surge when I experience symptoms such as this. Mine almost always get going at night too. When my symptoms calm down my sleep patterns tend to return to fairly normal. I used to also prop myself up like Lieze described and am not sure why that helps either??? but it did. Sorry you are having a rough time. There is nothing worse to me than not sleeping. My 3 yr old woke me up at 6 am this morning and I have felt exhausted and drowsy all day just from a shortage of 2 hrs. (normally get up at 8 am)

I have hygiene issues because of this.

I totally fear the shower because of how I feel in there and sometime it doesn't hit me until after.

If I were you while you are feeling this way I would just wash up. That way you can avoid the changes that occur with dilation in blood vessels. I know it feels really good and is soothing.

I used to love hot showers and would stay in til my butt was beat red. Now I'm fearful to stand in the shower at all, do better if I take them later in the day rather than earlier. I had started to do baths but then I had the abdominal discomfort and really thought the baths could be the reason so now I either shower on a chair and make it quick or I wash up.

I did take a bath but washed the bath tub out with Tide and bleach directly prior to my bath and used no soap. It's like what's the point. But it did feel good to get in and soak.

So find your triggers and avoid them and make sure you're taking plenty of fluids and yeah I would question the Lyrica too. There are many meds that can cause some orthostatic hypotension so maybe it is just exacerbating yours. Maybe go ahead and try the taper that TX Pots suggested and see if you get a bit better.

The driving scares me. I try to only drive when I'm feeling up to it but I know these episode can come on very quickly so if I have to I pull over and call for help. It's so worth it not to risk it especially for everyone else involved my passengers and other drivers not to mention my own life.

But yeah I just had a pretty major episode Saturday mid morning with adrenaline surges that seemed like they just wouldn't stop. I felt plastered on the bed like I could not get up. Next time don't try it. Stay down til you feel like it's safe to get up. Drink fluids and let yourself rest til you get out of that touchy mode you were in.

It scares me though I think how can I work at all like this??? And I'm scheduled Friday yikes I wish not I wish there was a different way for me.

Okay I'm going to go drink some water after having this convo I want to do what I can to stay hydrated.

We bought one of those large "rain" shower heads with hard pressure so that I could shower sitting down. I probably haven't taken a shower in almost a year standing up. I also shower every night around 9 pm. Works well for me! Just a thought, wouldn't want to be stinky. LOL

Hey Leize,

This sounds like one of my episodes that I refer to as an adrenaline surge. The only difference is my heartrate and bp usually skyrocket! I get them in intervals as well. It's almost like I will calm for a second and then like a wave or like I'm being plugged in a light socket and it hits me. I always have to rush to the bathroom as well. I tremble and shake and sweat, cold and hot as well. It is a horrible feeling! I don't care how many times I have dealt with it I still just crumble like a baby when it happens. My husband isn't super sympathetic either so it's hard. I think my best advice would probably be to take a xanax right away to stop it. I have been very stubborn about this, but am starting to learn how badly this is on my body. I have noticed that when I have overdone things or not been careful with my salt/water intake, haven't gotten good sleep several nights in a row , etc. this seems to trigger these sort of events for me. When they happen it can take me weeks to get things calmed down and back my "normal" POTS self. Sorry you are having a rough time.