TXPOTS

Thank you for posting your experience. I hope my POTS specialist can work with me to improve the pain by improving the cerebral hypoperfusion that is causing my pain. If we exhaust all treatment options in this arena, I will have to move on to a pain specialist. I know what you mean about the opiates worsening the other POTS symptoms. At this point, I just want the pain to stop. I'm glad you found something to ease the migraines. It's all about quality of life. I haven't seen cyproheptadine in ages though I recall studying it way back in pharmacy school. How interesting.

If it is migraine aura -- I'm not sure from your description and I'm no doctor, then I want to tell you that I have migraine almost constantly -- I'm medicated for migraine so I don't get to feel full blown migraine pain every day. BUT, I do get the aura. Most of the time it's just weird, barely there aura -- it's like I'm trying to read ajust my eyes all the time because I'm not quite seeing things properly due to weird but very slight light effects, but can't explain it any better than that. It's certainly different from the usual visual aura I can sometimes get when migrain pain breaks through. Then it's more traditional visual aura for migraine.

blue

Blue,

Would you find sharing with me what medication you take to prevent the full blown migraines? This is a constant problem for me.

Awesome. Thank you for sharing your story and offering those of us still struggling a ray of hope.

I've been thoroughly examined by 4 ophthalmologists. Three of them said I had a vitreous detachment and the last one who was the senior doctor in that office discriminated me by my age and said there was no way I had one. Took a quick look at my eyes and said, "Nope the vitreous is good. There is some tugging but it is still attached fine". I have no idea who to believe at this point, but don't really want to go back to that office. I got strung along for 8 months thinking that I was going to have a retinal detachment at any moment. The other doctors made it sound like it was inevitable...

I get these really weird lights in my eye. They are very difficult to explain, so I will give it a shot.

You know that effect you get if you look at a camera flash? I get those effects stuck in my vision out of no where. I do not have to look at a light or image for them to appear. It can be horizontal or vertical lines, dots, blobs or just a random shape. They are more noticeable if I blink repeatedly. I found some other people with this same problem here. It can happen in either eyes. One day it can be my left (like today) tomorrow it can be my right eye.

I now believe it is related to whatever problem is causing my POTS. When I was on a beta blocker for 2-3 months, they slowly went away and then disappeared completely. Then I came off the beta blocker to get more testing done and now after being off of it for more than a month, they are back. Every day I wake up and think, I wonder what new spot I'll see today. Sometimes I can see them in my dream before I wake up.

I don't know if anyone else has any eye symptoms here or not, so I wanted to reach out and see!

PS: This will be the first question I'm asked, so I'll just nip it in the bud now. I do not suffer from headaches or migraines.

Dana,

I have the exact visual symptoms. Before POTS, I had about 4 migraines sporadically through my life, accompanied by auras and visual disturbances. The POTS visual disturbances are very similar to a migraine aura. Beta blockers are used to prevent migraines. Even though you are not getting a full blown migraine I suspect this why the beta blocker took the visual disturbances away. I appreciate you bringing this subject up because I do have horrible POTS related headaches and a constant, persistent aura. I am going for more testing next week and will ask about a beta blocker.

I've got to agree with Dana and Sugartwin. I used to exercise fairly intensively, 5 days a week. 45 minutes on an ellipitical and then some weights was no big deal. Now, I'm lucky to exercise 3-4 days a week, and at a much lower level than I used to, and weights are really difficult. I almost pass out trying to do too much exercising, and have been told by numerous doctors to that the best thing is to keep up a MODERATE exercise program that involves 30 minutes of cardio that doesn't send you reeling (or 10, if that's all you're up to that day), and then try to concentrate some weight work (even using your own body weight at home - like calf raises on your stairs) to help with lower leg pooling if that's an issue for you.

Please work out at your own comfort level, and push yourself just a little to see what your boundaries are. Moderate exercise is good for everybody who can do it, and I think it's general health we should be looking at....the healthier we are, hopefully the better we'll feel, with or without POTS>

Cheers,

Jana

I agree completely, especially with the weight work suggestion. I have found that doing leg weights in the gym, in particular calves, makes me feel really good for a few minutes. Moderation is good too. I have made a valiant attempt at overcoming POTS with exercise. I went from light to moderate to intense (2 hrs/ day). There is no difference in how I feel between the moderate and intense regimen. I'd like to ask the new cardiologist to accompany me on my work-out routine and see if he can keep up and if he thinks I'm working out hard enough.

Wow, this cardiologist told you that he knows you don't feel well, but you aren't really sick. Hmmm.... I wonder if he'd share the same sentiment if he or a loved one had the misfortune of acquiring a POTS, one that the medical community has not found a definitive cause, cure, or even a reliable plan to improve quality of life for all POTS patients. Let me guess... he hasn't treated many patients with POTS.

I wonder if he did a literature search for the most recent study published on POTS and came up with Dr. Levine's article in JACC, hence his Dr. Levine like advice.

Personally, I have found exercise to be of great benefit. I now exercise quite intensively 1.5-2 hours/ day. I have well surpassed Dr. Levine's protocol based on a phone call with one of his team. Unfortunately, despite my initial hope that exercise would be the cure, I am still severely debilitated on a daily basis. It seems that I can exercise, but not stand and carry out basic tasks of daily life.

In May 2008, I was stepping out of a pool after a morning work-out of 75 laps freestyle of a 25 meter pool. That's the day I got POTS. Deconditioned, hardly. I was probably more active than 99% of the population. I did subsequently become very deconditioned after displaying severe symptoms, being misdiagnosed for a year and becoming bedridden. For the last 6 months, I have exercised every day, and I have not been able to get past POTS. In fact, the severity waxes and wanes with no rhyme or reason, despite a consistent exercise regimen.

I think it would be fabulous if exercise cures you. It is worth a shot. Remember you are the boss of your healthcare, and listen carefully to your body. Don't feel defeated if exercise is the not the magic bullet, and if you aren't comfortable with this cardiologist, move on.

It is very possible that the beta blocker is still lingering in your system, especially with the lower than normal standing pulse and lower bp. Half lives vary per patient, drug, and dose. I am surprised you were started on such a high dose of the Florinef. I'm with the other posters. It seems that POTS patients do best starting "low and going slow" on one drug at a time. Florinef often takes time to build in your system, along with the salt. I am betting you will see the full effects in 2-3 weeks. Give it more time, but if you are concerned, give your doctor a buzz.

I am so glad someone asked this question. I have read that it helps to sleep on an incline, but I just can't. I have tried and even when i fall asleep i constantly wake up with neck and back pain. Does anyone know exactly how sleeping at an incline is suppose to help with blood volume?

The partially upright position at night is supposed to train the kidneys into retaining sodium and fluid. Lying flat for prolonged periods (days to weeks) has been shown in studies to reduce blood volume in healthy patients. Some physicians tell POTS patients to try to lye in a recliner rather than flat in bed during the day for the same reason. I have my bed inclined a few inches. I probably need at least 5 inches, but I have problems with pooling in my legs at night when I try to raise my bed too high.

Wonderful news!!! Enjoy every moment.

Hi everyone, this is my first post and I've not introduced myself yet...

I checked with the THRIEEM Pots registry re. the exercise program today because my cardiologist had not gotten a response to his e-mail last Friday. I got a response that said the gal who has e-mailed previously is on maternity leave and the registry may not be attended while she is gone (until September). Has anyone else had a recent response?

Thanks,

Sandra

That would be Tiffani, and I think you just missed her. We talked to her about a week or so ago. I am sorry to hear someone will not be attending the registry in her place. I know they are very research oriented and only see a few patients per month. There are some wonderful exercise recommendations on this forum. Maybe you can start slowly with recumbent exercises and swimming (if you are not a faint risk), until the registry is up and running. I also wanted to participate, but you must be off all medications, so I was disqualified. I still pursue my own exercise training after tips from my doctor.

Nunntrio,

Yes, my Dallas doc recommended the tilt training. He has been working hard with me to try to get me more functional. Much of what we have tried has failed, but he is good about not giving up and moving on with the next treatment plan. It must be the nature of POTS. Treatment that makes one patient better makes another patient worse. I still recommend him.

I am glad you are feeling at least back to your normal "pots" self. You are very lucky to have a Dr. that is willing to keep trying, that type of Dr. is hard to find. I hope you did not mind me asking, I certianly did not mean anything negative by it. I am actually impressed that they are at least willing to try. I really need a POTS Dr. that is willing to do follow up care.

Nunntrio,

I know you did not mean anything negative. I didn't want to discourage you at all from seeing him, because he does have tons of different ideas. I have been a really, really tough case, as most of his patients get back to a what he considers a level 8 out of 10. I have stalled out, which is often is the case, but we keep hoping and trying different approaches. I am going back in 3 weeks for most testing and a different plan. I am also on the waiting list to see Dr. Levine since he takes an interest in exercise, and exercise has been the most beneficial for me as far as treatment thus far. I hope both of us eventually get past this awful syndrome.

Thanks everyone for the responses.

I am feeling better than yesterday and was able to resume light activity at the gym. So, I'm back to the yucky POTSy me and not the " I am dying. Take me to the ER pronto" POTSy me. Whew, won't be doing that tilt training again. I read some studies that tilt training can be very effective for NCS, but it must not jive with my particular kind of POTS.

Mack's Mom,

To my disappointment, compression hose (30-40 mmHg) waist highs don't do a thing. I have also tried an abdominal binder. This is perplexing, since I can visually see my legs turning blue.

Lieze,

LOL... I wish I was treatment POTS. The super effective treatment plans have evaded me thus far. This illness really waxes and wanes from day to day. It seems if we do too much or the wrong activities that we pay big time later.

Ana and Tammy,

Glad that I'm not the only one that is not able to tolerate tilt training. Thanks for sharing your experiences.

Nunntrio,

Yes, my Dallas doc recommended the tilt training. He has been working hard with me to try to get me more functional. Much of what we have tried has failed, but he is good about not giving up and moving on with the next treatment plan. It must be the nature of POTS. Treatment that makes one patient better makes another patient worse. I still recommend him.

Has anyone been prescribed tilt training at home? You basically stand with your feet approximately 15 inches from the wall and lean back. I was prescribed 10 minutes twice a day and to build up. I attempted this a few weeks ago and had difficulty even lasting a few minutes, so I stopped and concentrated on exercise instead. I feel better during exercise. For the past 4 days, I resumed tilt training and have been forcing 10 minutes/ day. My legs turn purple and blue within 2 minutes, and I feel very ill by the end of the 10 minutes. I pushed forward for 4 days.

Well, since yesterday's session, I've been in a major POTS flare. I haven't had symptoms like this in almost 6 months. I am feeling absolutely rotten (on death's door to be specific). I am very frustrated because I have come along way in 6 months. Despite still being very debilitated, I am able to partake in a relatively vigorous exercise regimen and take care of my and my children's basic needs. My husband can work without worrying about me. I am so upset that I find myself back at square one due to this stupid tilt training.

Has tilt training caused a major flare in anyone else? What is the best way to pull out of a flare and back to my usual crappy self?

I hear a lot about DDAVP here on the forum. I'm curious about it & how it helps with dysautonomia. My son drinks a TREMENDOUS amount of water. He gets frantic when thirsty..."I'm getting lightheaded- I need water now!" He's benefitted from florinef. I think he began taking 2 or 3 whole tablets and now is down to 1/2 of a tablet due to a rise in his BP, but the thirst issue remains. Despite the constant intake of water, his blood work consistently shows dehydration via the accumulation of very large RBC's.

What sort of testing would he have to have done before deciding if DDAVP would be helpful? What sort of doctor does this testing?

For those of you on DDVAP, are you able to drink less & still maintain your BP? What are the positive & negative side effects?

Thank you in advance for your help!!!

Julie

DDAVP is the synthetic form of the body's antidiuretic hormone, which is released from the pituitary. Some patients with POTS have a diabetes insipidus like syndrome and release lower than normal amounts of antidiuretic hormone. This is probably due to an impairment of the renin angiotensin aldosterone system. Angiotensin II is partly responsible for ADH release. DDAVP can be given safely in tablet form at bed time to prevent loss of volume at night. For use during the day, an endocrinologist with knowledge of diabetes insipidus can perform a water deprivation test to check serum and urine osmolality under dehydration. Since POTS patients can be hypovolemic to begin with, you need to find an endocrinologist willing to learn about POTS. I would not take DDAVP during the day without testing and monitoring by an endocrinologist.

I was found to have diabetes insipidus (DI) during my water deprivation test. My DI is always present, but varies from day to day. I have to micromanage my DDAVP. The risk, especially to patients with POTS, is hyponatriemia (low sodium). I must be on Florinef while on DDAVP since I do not retain sodium or water efficiently (low aldosterone and DI). Yes, I drink less water. Before DDAVP, I was drinking 6 liters/ day and urinating about the same volume. While on DDAVP, patients must only drink to thirst. I was misdiagnosed with simple DI and put on the more potent nasal DDAVP. I went into hyponatriemia in 3 days. I could have died. This is a drug that can be very helpful, but it also must be monitored closely.

I'm not sure how long you were on Florinef, but it takes weeks to months for maximum effect.

What has helped me: Florinef, DDAVP

What has not: Midodrine, Clonidine, Cymbalta, L-arginine (nitric oxide precursor). I had bad reactions of Cymbalta and Midodrine, and Clonidine made me worse.

The biggest help: Exercise

This was my worst symptom when my pots was really bad. It got so bad I could not even stand upright for more than a few minutes. It was so disturbing my brain fog would get so bad I was confused and even had to be hospitalized my face went numb if I stood up too long. What greatly helped me was taking Lexapro. This was a miracle drug for me and I only took a low dose of 2.5mg. However it stopped working after about 9 months even increasing the dose and I was very greatful at the time something was able to help me. Something else that really helped me was lifting weights and doing leg lunges. It was difficult at the time but I really pushed myself and now my Pots symptoms have improved.

Interesting, I also get the numb face. You're the only other person that I've seen specifically mention this. I am also finding improvement with lots of weights and exercise.

I'm a pharmacist and second the above posters. Most scary side effects would only apply at doses > 0.4mg. That being said, it's always best to start low and go slow, finding the lowest effective dose. Keep an eye out for headaches, high blood pressure, swelling, and have your potassium and magnesium checked via blood work periodically. It's also best to take with food since Florinef can be tough on the stomach. Also, some patients get insomnia when taken later than 2pm (noon for me personally). Best of luck! I wouldn't be out of bed without Florinef, but I have had to go down on my dose due to blood pressure issues. 0.1mg is perfect for me, while others are on higher doses with no problem.

Interesting....

It is said to be a cholinesterase inhibitor (this is Mestinon's mechanism of action). It doesn't look like there are many studies.

YES, where can this test be done? My absolute worst symptom is brain fog/cognitive as well. It would be nice to know WHY and even better to actually have a test that proves it.

Thanks, for posting that article. I have not had a chance to fully read it but I will once I get my kids to bed and can focus (for some reason my fog lifts a little in the evenings making it easier to read and focus) I will definitely pass this along to the neuro. who is not a POTS specialist. Unfortunatly I do not have a POTS Dr. near me so at times I forget how uneducated most dr.'s are about this and try a local guy.

SUMMER/TXPOTS - Can you tell me where/how you got a Cranial Doppler during a tilt? I think it would be hugly helpful for me.

I had it done by Dr. Suleman in Dallas who is a POTS cardiology/ electrophysiology specialist. He has an autonomic testing clinic, so that is what you need to find.

I don't think Dr. Levine is accusing patients of being lazy or deconditoned, but he is saying that patients have a smaller heart than the rest of the population (only one or two standard deviation difference). The reason is unknown, and many patients were very active before POTS. I don't have an opinion yet as to whether he is correct or not. Personally, I have not been cured by exercise, but I have never gotten the impression from his team that patients are lazy, deconditioned coach potatoes.

He is my dr. While the program helped me for a while and it did help me to be able to function with out the use of medications. I had a huge crash and had to go back to meds. He really believes that all POTS is due to deconditioning, period. When he realizes that his program will not help you he pretty much tells sorry there is nothing I can do for you. You just have to get used to it. I was really disappointed with the way he went about it.

Did he perform a MRI of your heart that showed your heart was smaller?

I would think a MRI of the heart would answer this. I don't think the standard ECHO necessarily measures dimensions of the heart chambers?

Also, my husband spoke with him, and he was not saying POTS patients were deconditioned, but something had occurred to change the size of patients's hearts. In predisposed individuals, this change can occur within 24 hours based on his research.

My transcranial doppler showed reduction of blood flow to the brain. If blood is pooling in our legs and abdomen, it can't be upstairs in our brain as well. I take it this neurologist is not a POTS expert.

My pulse has stabilized quite a bit, and I still have terrible brain fog, headaches, and blurry vision. I also get that narrow pulse pressure.

You have to stop all medications prior to the program, so this may not be an option for everyone. I hope the protocol will be available to ALL patients in the future.

I guess I should add my lab/testing info too:

--Low ADH, tested twice

--Low aldosterone, normal renin (aldosterone normal one year later)

--MRI shows normal locally, but brainsurgeon read via mail said not sure, let him know if I ever get any odd pituitary labs(uhhh, NOW I get the low ADH reading!). I am awaiting results from a new MRI of the brain/neck that I will get results in mid-July.

--1 cm growth on adrenal gland

So, TXPOTS, I understand what you are saying with the compensatory effect with the RAAS, but it makes me think: what came first, the chicken or the egg? Did we get higher b/p, which in turn turned down the RAAS, or did we get lower blood volume, then the higher b/p to get blood to brain? What started all this?

Firewatcher, I remember you had the ADH issues, which makes me wonder how many of us have a ADH or aldosterone issue. That article you mentioned, about the Renin-Aldosterone Paradox, I had printed out and brought to a cardiologist a year and a half ago. He didn't really address the issue very well--just wanted to do the usual by giving me a beta blocker.

Exactly, what comes first the chicken or the egg? My thoughts exactly... For what it's worth, the AVP test is notoriously unreliable. The water dep test is a better measure of diabetes insipidus. There is supposed to be a new, better AVP test coming out soon.

Hypovolemic POTSy here:

Unmeasurable aldosterone, very low renin (both on multiple occasions and during a formal water deprivation test in hospital)

No AVP detected during water deprivation test, though I seemed to concentrate urine to the 300 mOsm/kg range (partial diabetes insipidus syndrome from POTS)

Normal Pituitary on specialized MRI of pituitary, flair present for AVP (meaning I have AVP present)

Other Pituitary Hormones Normal

My best explanation: A compensatory increase in vascular resistance occurs when standing to get blood to the heart and brain. This increase in resistance tells the kidneys to suppress the renin-angiotensin-aldosterone system. Therefore, aldosterone is not produced in adequate amounts by the adrenals. RAAS is also intricately tied to AVP release by the pituitary. Our kidneys think we are hypertensive and not in need of the extra fluid when we are actually hypovolemic. A similar scenario occurs in pheo and even in hypertensive individuals. This is the best explanation I've got, though others will have their own hypotheses.