AllAboutPeace

I recently took my son for allergy testing and they won't do the test unless you've been off antihistamines for a minimum of two weeks. I realize this would have a different sensitivity level, but they consider that the meds take that long to fully clear the system. I can't attest to the accuracy of that, but that is what I was told. I hope things go well for you.

SeattleRain, My heart rate is on the lower side as well and seems to be getting lower as time goes by. My avg heart rate was in the 60's when I had my Holter (almost a year ago) and my nighttime hr was in the low 40's. Now my resting hr rarely hits 60. It's mostly low 50's or 40's before bedtime, so I don't even really want to know how low it gets now when I'm asleep. I've also been told that my numbers are just low, so it's not something to worry about. I tend to cringe at those statements because when my resting hr is 40's, I'm also symptomatic (makes me cough, weak, constant yawning, etc). I'm wating for an appt with my EP/Cardiologist this month, so I will definitely be talking with her about it, just to make sure she is of the same opinion. I certainly understand your feeling uncomfortable about that much of a drop while sleeping. Low heart rates (bradycardia) have been discussed on the forum before, so you may want to search it, if you haven't already. It does seem to be part of dysautonomia for some of us. Are you seeing a cardiologist as well as your GP?

Pumpkin- i'm sorry you are going through all of this. If you don't mind me asking, did your mitral valve issues start the same time as your pots?

khaarina, I also relate to what you are describing. I have describe it as "I feel like I'm waking out of hibernation or a coma" - it's like everything slowly gets functional. The Florinef has actually helped me with this symptom, so I hope it will help you too! In 11 months, the one and only day that I didn't feel that way in the morning was after I had IV saline the day before. I was able to get up out of bed in a short amount of time. Now, that I'm taking Florinef, in general my mornings have improved. As a side note, It did take me 4 weeks of taking it before I really saw the full benefits. Since both the saline and Florinef have helped with this, it would appear that low blood volume was an issue for me.

I couldn't/wouldn't drive for 11 months since the sudden onset of Pots. I always had to have my feet up because of severe blood pooling. Even as a passenger, I was foggy brained, had visual disturbances, had an inability to process information and react quickly, had some sleepiness and some nausea - none of which amounts to a good driver. In my fifth week of starting Florinef (a month ago), I was able to drive because it helped with all of those above mentioned car symptoms. I still only do short drives, when I feel it is completely safe for me to do so (which includes always having water with me and that I've had lots of salt and water before going). If I'm feeling off or if I'm doing an outing that requires some standing (i.e. to a store), I still rely on others to take me. It definitely is tough to rely on others for everything that we have to when we are sick, but I'm starting to feel like it's ok - I think we are all here on Earth to help each other. Maybe we have had our time to help others, or maybe it will come in the future and in different ways. The people who care about us want to do anything they can to make us feel better and since they can't do that, helping us with the practical things is the next best thing. They, too, will have their time of need someday or maybe they already have and maybe we'll be the ones to help or maybe it will be someone else - either way the cycle continues. That is not to say that I don't feel or haven't felt like a total burden - I have felt it deeply...but, we are doing the best that we can with what we have to work with and even though we may or may not be able to drive or grocery shop or go dancing, most of us have become experts at living in the moment and realizing that health, life and those we love are to be treasured. In my opinion, those are pretty good qualities to have in a friend, mother, father, sister, brother, partner, etc. Now, we just need a cure...

Southbel - I'm sorry that you are going through all of this right now I'm a week away from the one year anniversary of Pots' sudden arrival in my life and when I read your post(s) it brings me right back to those feelings and internal struggles I had when I went from active and "healthy" to completely debilitated. There is definitely a process of grieving that we go through and it is probably as individual as we all are. I know I didn't hit one stage at a time, I was back and forth constantly. Looking back, it seemed like I was juggling with the emotions (denial, acceptance, fear, loss, sadness, resolve that I will figure this out (because that is what I've always done), appreciative for the gifts in my life). I would never hold on to one of them for long because the next one was right behind it. I didn't feel like the same person anymore - my body and the way it was behaving made no sense to me at all - completely foreign, unreliable and unpredictable. Although, I can look back and see what I have learned and gained in that year, it's not a period of time I would want to repeat and I hate that anyone else has to go through it. All I can say is - you are not alone - any feelings that you are having have been felt by others on this forum. So, allow yourself to feel whatever you are feeling and know that your strength (and/or your ability to juggle ) will bring you through it. My internist also thought I had a brain tumor because of the severity of symptoms, sudden onset and unequal pupils. They did a CT scan and then an MRI when the CT showed something suspicious. It turned out that it was all Pots. Is your Pots doc following that up? It's good that your cardiac tests came back with no issues - even though it feels like it's not even possible to have "normal" tests when our bodies are soo dysfunctional.

Jennij, I haven't experienced potsy symptoms that you mentioned with that type of blood draw, but it does sound like it could be a vaso vagal response. I have to say I do find it a little annoying when they dig around to find a vein though. I realize that sometimes there is just no choice, but they will often say empathetically that they don't want to 're-poke' me (to save me from feeling that tiny needle prick...which doesn't bother me at all), so instead they opt to dig around blindly under my skin with a sharp needle. How is that better?!?

Yes, I can definitely relate. I have gone out to dinner a few times over the past year (since onset of Pots), but I went only because I felt like I wanted to do something remotely "normal" for my husband and son. I would go and feel miserable the whole time. Most times I just stayed home while they went. Anyway, recently, my condition has improved enough that I actually felt like going out for dinner. I was soo excited about that fact and shared that news with my husband. I was all smiles when we got in the car and three minutes later I felt horrible. He was looking at my like "what???". Oh well, at least I had the feeling even if it was briefly.

Yes I do think you should contact your doc. It sounds like you are really miserable Keep us posted on how you get along.

Wow, that is a huge amount of information! It is really a very potent herb. I was surprised to read that Clinical studies have shown that short-term use (not more than 4 weeks) is safe. So for those that take or have taken it for Pots, do you only take it for that span of time or do you monitor bloodwork and bp the same as you would with Florinef? For anyone who has taken both Florinef and licorice (at different times of course), I'd be curious to hear how the experiences were similar or different.

How are things today? I did have a huge headache on Day 4 of taking Florinef, so the next day I halfed the dose (I started at .1). Since I had no headache on that half dose day, I bumped it back up to .1 again the next day. I haven't had another headache like that since (its been about 2 months since I've started). I didn't see big benefits of the med until after 4 weeks.

Hi Jillian, First, I'm so sorry that you have been going through all of this. I agree with others that it will definitely be best for you to see an autonomic specialist, but unless they can squeeze you in really quickly, you may have a bit of a wait for this. Personally, I think that there might be some value in being hospitalized. My very first episode that led to my life changing completely was similar to what you described. I lost consciousness twice, was completely soaked instantly with sweat, couldn't move at all (like a kind of intense weakness paralysis). I was in a restaurant at the time and when the paramedics came I couldn't speak to them; didn't have the breath in me. They gave me oxygen and a bag of IV before even wheeling me out of the restaurant, then more after that. It would be good if they could capture one of your episodes while you are monitored so they'll know if it is something to be concerned about or just part of the dysautonomia. My family doc and an ER doc hospitalized me about 6 weeks later because they couldn't figure out what was going on. They did tons of tests, but I think the most valuable thing was that they could see what my monitors looked like all the time. Whenever I would get up to go to the bathroom the nurses would come running because of my heart rate. The nurses also would tell me about some irregular heart rhythms that they saw through the night - which for me was confirmation of what I was already feeling. This allowed me/them to figure out patterns, which would not have shown up during a brief ER or doc visit. They also get to know you a little bit which helps them to understand that this is definitely not an anxiety or attention seeking issue. Also, the information you get from 24/7 monitoring will be useful to the autonomic specialist whenever you are able to get in to see her. The ER doc told me as he was going through the admission papers that they will need to look at ruling out issues with heart, brain, lungs, etc,etc and if we don't find anything we'll have to look at anxiety. I accepted that as part of his elimination process and realized that he was saying it because to him at that point I was a stranger (a new doc doesn't know us as an individual at all) and as long as he didn't label me without ruling out the other things first, I was ok with it. It sounds like your doc is concerned and he is wanting to be thorough. I know it's hard to go through repeated testing, but this process may be something that will help you find answers in the end. Do you know what is going on with your heart rate and blood pressure during your episodes?

The same thing was true for me re: blood volume. I tried for 10 1/2 months to exercise, but couldn't get beyond 6 minutes on the recumbant bike. I was completely exercise intolerant (with nasty side effects/heart rhythm issues/severe dizziness/long recovery time, etc) until I started Florinef. After 5 weeks on the med I was able to exercise and I'm up to 25 mins on the upright exercise bike and last week I walked around the block without squat breaks! The second time around wasn't as successful...but it's still a big improvement. No amount of salt and water intake helped me with this before the med. My doc did look into the Levine protocol for me as well months ago, but I know I would not have been able to do it. My EP/cardiologist and internist agreed that I should just work slowly/at my own pace. There are people who have reported success with Levine's protocol, but some have said that as soon as they stopped exercising, symptoms return.

leydengs, I'm sorry to hear that you are having all of those awful gastro issues Since you mentioned that you eat rice and rice cakes - just wanted to make sure that you are aware of the recent issues with rice and arsenic levels - someone posted about it awhile back ( http://forums.dinet.org/index.php?/topic/21450-rice-contains-worrisome-arsenic-levels-says-consumer-reports/page__hl__%2Barsenic+%2Brice__fromsearch__1 ) . I'm not thinking that this is causing your problems, but if you are consuming alot of rice products on top of your existing gastro issues, it may be something to consider.

My doc asked me this while reading exactly that on my chart!! I know it was there because the nurse came in, opened the file and said "oh, you are here for ___", then he came in, read it and asked me anyway. Maybe they are assessing how we say it?? This is unrelated, but if I could function I would soo love to be a patient advocate and have the freedom work within the medical system as needed.

No worries, Matt! We all understand the feelings that would lead to a comment like that. Pots can be such a debilitating, isolating and frustrating condition especially when you feel like you are abandoned by the medical system. Honestly, I'm not sure what state I would be in right now if I didn't have this group to share with and learn from and the ability to seek answers on my own. I hope things improve for you soon...

Dr Thompson touched on this briefly in the Changes video when he talked about so many people passing out in the shower from washing their hair (because their arms are up over their head). He said something like - when you raise your arms over your head you constrict the veins in your upper chest/shoulder area, so you get even less blood flow returning to the heart. So, like Issie said, your heart is already working hard to pump to those higher regions and it now has even less blood to pump out - so the tachy is trying to keep up with all of that. I agree that it would be interesting to see what happens with non-potsies...

That's brilliant ! What a great idea! I'm happy for you that you were able to rule out epilepsy and you're a little bit closer to figuring things out.

Hanna, Licorice root is not safe to take during pregnancy because it mimics the effect of estrogen and could lead to problems. I have several friends who would have 1 -2 cups of coffee /day during pregnancy and there were no apparent effects from it. I always think it's a good idea to listen to all the advice, but in the end go with your gut instinct. I didn't drink coffee at all when I was pregnant because I was trying to do everything 'perfectly' according to everything I'd read. Well, in the end, my perfect pregnancy turned into an emergency C-section, two months early because of a freak umbilical cord issue. My son needed resuscitation at birth and guess what one of his early treatments was?...caffeine injections!! I was thinking "what???...I avoided it for seven months and you are injecting him with it".

SpinnyC - I know !! I never know how to answer that one either. The last time I said "good" (thinking it was a nicety version) even though I meant "less like death" and I thought my doc was going to get whiplash - he turned his head around so fast.

Good news, Puppy! I hope it goes well for you.

Yep, same with me temperature - wise. I don't tolerate any cold liquids. I have no problem drinking lots of water (and it definitely helps with my symptoms), but it has to be room temperature.

Soo happy that the day went well for you, Michelle! Congratulations

Hi Alex, I've only been taking Florinef for about 6 weeks, but after 4 weeks, I noticed that I was feeling really bloated all over. So although it was helping that part was making me uncomfortable, so I dropped the dose down to .05 (from .1). I'm still feeling the benefits of the med, but I've lost that uncomfortable feeling. Also, I'm hypotensive and the Florinef has brought my systolic up to perfect numbers (between 110-116), but my diastolic numbers haven't come up alot like yours have (hovering around low 60's). Your reading of 160/105 is quite high, especially if you are used to much lower numbers. I'm not on a beta, so I have nothing to add about the possible interaction, but I agree with Hippychic that maybe you should discuss a dosage change. I know there have been discussions in the past about the possibility of decreasing Florinef to a maintenance dose, once your body becomes hydrated (of course as long as you are not taking it for adrenal insufficiency). That seems to work for some.

Thank you everyone for your input - I usually skim over the Mast Cell conversations because I didn't feel like it applied to me... It seems like mast cell issues are becoming really common lately. I wonder what that means. It seems for me, at least, the Pots issues came first, but is it assumed that mast cell issues are causing Pots?? For those of you on medications for it, do you see an improvement in Pots symptoms or is it just a totally separate issue? Is there someone specific you should see for these kinds of issues or do you basically have to see a mast cell specialist?