Nicole's Mom

veryblue, It is my strong opinion that Nicole has a spirochetal illness and Nicole sees it as a possibility. But it is very hard to prove because the tests are unreliable. Once Nicole is less fragile there is a bloodwork order (about 20 tubes worth) to look for all sorts of possible reasons for the POTS. Nicole has many gifts and talents in many ways but especially as a writer and as a visual artist. She's smart and very kind and had dreamed of teaching creative writing at the college level. Before the May relapse Nicole completed her first draft of a short novel and now needs to edit it- just waiting for the brain fog to lift. She is a published poet and has sold a small bit of artwork. One of these days when I am not in the caretaking role and so tired I will write her story for this forum. She would also make a great counselor for sick people- which she has been talking about lately. She's a good listener and has certainly "been there". Thank you for asking about her and no you are not the least bit nosy. How old are you, veryblue and where is your health presently? Beverly

Geneva, Thank you for your energy points tip. It sounds like a good way to sort things out. Nicole's so brain foggy and brain exhausted- I may have to make up a chart for her. She has never been this fragile before. This seems to be the worst relapse she has ever had. Before last May when she was in remission she was doing alright and then CRASH- into the bed for months and then CRASH -deeper into a relapse. She has had 5 crashes in 8-1/2 years and when she crashes she goes from 65-75% functional to 0% functional. The way she crashes so deeply is scary. It's very scary how severe she can get. When she is in remission she is always a tower of cards. Maybe the point thing will help her realize her potential and/or limits whether in a crash, climbing out or in remission. It's helpful to know for sure that the compression hose takes a lot of energy. It seem like it would. It certainly sounds like maybe while she is so weak and vulnerable - it is not a good time to try them. It's not as if she can go "prancing" around her apartment. She can't even sit up without feeling exerted. The compression hose in her case could end up causing more harm than good at this point. You remember well about being almost ready starting a new med. She did just get a beta blocker (toprol) but has not yet tried it because her blood pressure is normal almost laying down and when she stands it drops. Her heart rate races up from normal when she is upright so in that case it could help- it all seems so ambiguous. Nicole definately still has low blood volume but it might be improving by smidges. I look at her veins and she is a little veinier than she was (no veins) but the veinier look is not always consistant. She did- just yesterday increase the Licorice from 900mgs. to 1350 mgs per day. And if she is a responder ( I pray she is) maybe this could be something useful. She does plan to keep increasing the licorice. If this doesn't work we may indeed ask for the saline just to give her body a rest/ reprieve. Nicole's doctor did say if she wanted she could have (or might be able to have) another week of IV saline and we may take him up on it ( if he is still agreeable). Best Wishes, Beverly

Oh wow!!! Thank you very much Nina for your explanation and the website. It will help me a great deal!!!! Best Wishes, Beverly

It's been 5 weeks since Nicole dropped 6 levels below the basement when she had this relapse within the relapse. It seemed that she was improving but then about 1 week or so ago she slipped back in some ways- it seems she was feeling a little better and then overexerted a bit not realizing that she could be so vulnerable or fragile- she was barely doing much at all but her body took it as overexerting. She is still in laying down mode and today she described her fatigue as the worst fatigue she has ever felt. She is so exhausted she can barely whisper when this is going on. Do any of you have this going on or have you ever had it? By the way- some good news is that her heart isn't as racy upon first standing and her supine blood pressure is better now that the bed is elevated. Although her heart does get racier while she's up and her blood pressure drops. The compression stockings came today and I need to wash that new clothes smell out (she's sensitive to that smell). I am afraid that simply getting them on her (even with my help) could overexert her because of what happened last week when she slipped backwards. Also when she needs to use the toilet she'll be struggling to push them down and pull them back up. I studied them and they seem like they'd be really hard to put on. Maybe should she wait until she is more stable to use them? What do you think? She does lay down all the time still. Thank you, Beverly

I know that cortisol has been discussed here and there but I am completely confused as to what it is. I'm learning about adrenaline - I think I'm getting that straight-at least (I think I am) that hypovolemia causes the body to spurt out adrenaline because I see Nicole all adrenaline-y lots of times and I know it's worse when she's most dehydrated. Now I'm trying to research licorice and I keep coming across references to cortisol but nothing ever defines what it is. I can't seem to put it into any context. It would help me a lot in my research if I could understand what cortisol is and what is its function in a normal body. Also is there any relationship between adrenaline and cortisol???? Thank you, Beverly

Radha, I checked today and the brand Nicole uses is Nature's Way. I am so glad you asked about licorice because when we read the back of her bottle we realized that she was only taking 2 capsules (450 mgs each) or 900mgs per day and the recommended dose is 3 capsules 3x per day. Somehow we both mistakenly thought she was already taking 3000 mgs. I wonder if this is a recommened dose for something like a cough or a stomach ache/ heartburn. And perhaps someone with severe hypovolemia needs way more. If anyone on this forum knows I'd love to know the answer. Meanwhile I plan to research licorice as well to see what I can come up with. Just for the sake of putting together information- when you took licorice do you remember how much you took and for how long? And were you doing the high salt and fluid loading at the time? Best Wishes Beverly

Radha, I read through all your posts since you joined. I really feel for you because my daughter is severely affected and has many parallel problems to you. Also she is just one year older than you. I feel like can easily imagine what your day is like. I noticed that you have not tried florinef because you have severe headaches. You may have headaches because of the reduced blood flow to your brain/ blood volume problem. It is possible that florinef might not increase your headaches but rather reduce them if it worked for you, i.e. increased your blood volume. Florinef is what got my daughter functional again initially. She took one .1 mg pill and was upright within 2 days after laying down for over 3 months. It was like magic. It corrected her blood volume issues to a great degree. She wasn't perfect but she was 75% her old self- and up and about. Yet it is my opinion that she got bad advice about the florinef as she was advised that since her "condition" would probably go away she should make it a point to taper off the florinef (she had not yet been diagnosed with POTS but yet a doc recognized that she had a need for florinef by common sense and clinical evidence). Having gone off the florinef (or at least way down) she relapsed and then needed to climb slowly to 6 florinef to gain any relief. She tapered off that huge amount and now it isn't working at all. If we could do it again I would have wished her to initiallly remain on the florinef forever at that .1 mg dose- just in case the tapering off is what caused it to become so ineffective. Of course that is guesswork but still one has to wonder. Anyway - long story short- you seem to have similar issues to my daughter- parallel in many ways- I just wonder if you are indeed a good candidate for florinef and that maybe it would reverse your headaches and get you on your feet if you are a good responder and thus if it increased your blood volume. Initially when she took the .1 mg Nicole started at a tiny dose and titrated up. If you wanted to try it you could start at the tiniest dose - the very tiniest - like a scraping of the pill and titrate up. It is something to think about at least. Meanwhile, I will find out what brand of Licorice Nicole uses in case you wish to try it again. I know she uses capsules. She is a purist and uses supplements with the least amount of additives. Also I will let you know if it helps her over the next couple of weeks. She is completely bedridden and couldn't even sit up in a wheelchair. She was on 2 capsules yesterday (@ 3000 mgs.) and I think plans to increase it. Take care, Beverly

Radha, Sorry (I''m very worn out) I just reread and saw that you take 10 gms of salt already. And excuse me if I missed this too ( my own brain is quite fried) but what about fluid intake to go with the salt - how much do you drink per day? and excuse me again- I also see that you've tried the licorice. Sorry I missed that too- But now that we are on the subject again- just curious how much did you take and for how long did you try it? Take care, Beverly

Radha, Perhaps you've posted this before but I just read how you are presently unable to stand or walk. This is how my daughter Nicole has been for a while now- except for quick bathroom trips. She is 28 and has so many talents gifts going unused and although she is brave she has many difficult times wrapping her brain around the fact that this has happened to her (Zoloft is beginning to help with this). Having witnessed what my own daughter is going through I can empathize with you as to how difficult your own situation is. Excused me if you have already addressed this- but I was wondering when were you last able to get around okay- upright and such? How long have you been laying down? Nicole has hypovolemia- presently she has a relentless case of it. It was last May that she crashed and was climbing out of it and was even able to go for quick rides to the store and back but then she crashed to 6 levels below the basement on Sept. 15th. Just yesterday we ordered compression hose for her because of all the recommendations on this website. Her bp drops when she gets up for bathroom trips. Hopefully this will help her. Also since the Sept. 15th crash she has gradually increased her salt intake to @ 12-15 gms and loads with water. You'd think she's be bloated beyone belief but she is not at all bloated in the least bit. However when she first stand up her heart rate no longer shoots to 150 but rises to around 95. So that is some progress- and maybe very well due to the salt and fluid loading. She has been on 4 Florinef and they no longer seem to work. She began taking licorice two days ago. Today she took 2 capsules = 3000mg (I think). Also yesterday the head of her bed was raised 5 inches and that helped to reduce her supine blood pressure immediately from 150/90 to 130/76. At night Nicole's symptoms decrease a bit as is the case it seems with many POTS patients. Mornings are tough. But here's a trick she learned from using info from this website. At night she eats a good amount of food right before going to bed and drinks lots of salt water with it (many seems to say that they see better effects of salt when taken with food). Sometimes she cannot do the bedtime food/salt thing because she might be nauseous and cannot eat. But she has noticed when she does do the food/salt thing at bedtime the next morning is apt to be more tolerable. I will let you know if there are improvements in Nicole as climbs up on the licorice dose. I am so sorry that things have been so rough for you and I will keep good thoughts going for you. (By the way I notice you ask a lot of good questions). Oh yes- what about a doctor? How is your doc? Do you have one who is POTS literate? Best Wishes, Beverly

Thank you so much opus88. When you next check your e-mails- you'll find a "note" from me. Beverly

Just wanted to add my congratulations to you. From a couple of the comments posted here it sounds like you live near family and a very supportive mother. I hope this can bring you a good measure of comfort that you will have help as you go through this pregnancy and lots of extra love to go around for when there are two children in the picture. I also agree that you should check into which meds are okay, etc. What is so nice is that this is such a phenomenal forum and you will be able to keep everyone posted every step of the way and in return you will receive nothing but support and positive thoughts. Best Wishes Beverly

Blackwolf, Wow. You have indeed had a great deal of stress. What you have been through is monumental and the way your body responded - that feeling of "crashing" you experienced is more evidence of how one cannot separate the mind and the body. Even a totally healthy person's body would react to such stress. Having said that I hope that over next few days your body will be able to start winding down from all the constant stress you've been under especially since you stated that your daughter is doing well in therapy and you feel like you are able to start moving on. Maybe you are already beginning to feel better - healthwise- and improving. I hope. Glad you got some sleep- even it is drug induced- it's better to get sleep so that your body can start healing again. Thinking good thoughts, Beverly

Nina, Glad to know that you've got a solution to your problem. You should be feeling much better right soon after you get on the antibiotic. Beverly

Hi Lisa, Welcome. I am posting on this forum for my daughter who is 28 until she is well enough to sit at the computer and post for herself. (She is finally starting to come along from her recent relapse). I (we) joined 3-4 weeks ago. This is the greatest place to come. There are a lot of really, really nice people here. You will find that there is incredible support and a great deal of information. Take care, Beverly

Blackwolf, I'm so sorry that you have been having such a rough time along with the sleep problem. Nicole has had her share of sleep problems, especially recently since she hasn't been doing well and I know how icky she feels when she sleeps poorly. For her this seems to go hand in hand with losing her appetite as well (plus other problems). About Valerian: Some people do fine with it and get good results. However I might add that if you search the herb books you will find a warning that some people have the opposite effect from Valerian. In fact I know of three people who had the opposite reaction to Valerian. Each was snapped awake just about 2 hours into sleep with high anxiety. (I am one of the three, Nicole is another, and a male friend of the family is the third). Having said that about Valerian I will add (with a bit of hesitancy- because of the Valerian experieces) there are other herbs (you can get these in tincture form) that are known to relax the body and help with sleep. I have not heard of anyone experiencing the Valerian thing with these but as you know everyone is different and everyone reacts differently to different drugs or herbs or what have you. So one never knows. If you decide to try any of them you might want to really read up on them. The relaxing/ sleeping herbs are: Passionflower Hops Kava (not too high a dose and never with wine or liquor of any sort) Skullcap Since herbs can be powerful and it's always best to be cautious anyone who is overly-sensitive to meds should take only take a smidge at first to test it out (just maybe 1-2 drops of the tincture in a small amount of water instead of the recommended 20-30 drops). Another thing is to take that smidge in the middle of the day instead of at bedtime just in case the opposite effect thing occurs - then you won't kept awake. Take care-hope things start turning in a better direction for you really soon. Beverly

Emily, Wishing you a HAPPY BIRTHDAY and more wishes for better and better and better days ahead!!! Beverly

Thank you everybody VERY much for all your help and for your thoughtful responses!!! Beverly

1. I'm so sorry that you are unable to take florinef- it worked so well for Nicole and now it is ineffective and as a mother watching my daughter suffer I must admit I find this so frustrating -that there are no drugs similar to try. People with other conditions like high cholesterol or glaucoma (my husband has both) have choices when the one they are on becomes ineffective. This happened to my husband and his eye drops. The ones he was using weren't working anymore after 3 years and the pressure had built back up in his eyes- very bad- but luckily he could try another eye drop and now his eye pressure is very good. Anyway that's just venting about the lack of florinef like drugs. But meanwhile my first question to you is this: without florinef in your life how do you manage to compensate for the loss of that drug? 2. I see you have dealt with dyautonomia in more than one way. Does this mean that you were born with it i.e. are there are others in your family who also have dysautonomia? 3-4. I went to your website and studied your beautiful flowers. Being a gardener myself who loves to admire the gardens of others I can recognize works of love when I see them. Your works of love are truly gorgeous. You must get a wonderful, spiritual uplift from creating such beauty. I also noticed that you work better when the weather is cooler- makes sense for sure. I've also read that you are working on your PhD. How do manage to pace yourself? And do you have ups and downs? Beverly

Venting is one of the best things. When Nicole is going through a tough, tough time as she has been lately she sometimes feels the need to vent and afterward there is a different energy in her face- in her eyes. She always feels better. Lighter. This is a great place to let it all out- there are so many caring people here. You have been through a lot. I don't own a pet but some of our good friends do and we have seen the grief and mourning they have gone through when they have had to put their pet to sleep. I have seen how can be devastating for them. They say that there is a big void. So cry, if you feel like it - as I have seen my friends do when they have lost a dear pet. And about that doctor. Sometimes it's hard to fathom how some doctors get the reputation for being so great. It sounds like you need to trust your own experience with him - and find someone else even it is no easy chore. Take care, Beverly

Nina, Thank you so much for your help. I am wondering now if you are not on florinef presently because of the high bp? Or were you able to resolve the high bp problem and resume the florinef? Beverly

Geneva, Geneva, Thank you for your response: I have a few questions for you if you don't mind. " I start every morning with 20 ounces of salted water BEFORE I get out of bed in the morning and continue drinking all day with at least 16 ounces of gatorade diluted and salted." Approximately how much salt do you put into the 20 ounces of water? And when you drink all day long - the diluted gatorade- how much do you dilute it- how much liquid do you end up with? Do you drink anything else besides the initial 20 oz. and the diluted gatorade? Nicole drinks water all day because she is so thirsty. I can tell when she is getting better because the thirst begins to abate. She is really putting the salt down lately and it seems that it is paying off. She is drinking chicken broth too and now began adding miso which she says is really salty. It seems to be so important. It should be obvious that salt makes you retain water but when there are so many systems awry it's hard to sort it all out. I don't recall anyone "medical" ever telling her to take salt as part of her regimen. I am so grateful for this website and everyone who has spoken so much about the importance of salt because she really does seem to be moving forward, albeit slowly, from that "grave" state she was in just four weeks ago. I will pass onto Nicole your validating words about the salt and the food. That is very interesting what you say about Florinef and being wired from it. What happened to you when you went off of it? Do you think all your salt intake compensated for the lack of Florinef? Are you managing at the same level? Are you doing okay? It sounds like you are less dizzy. Thanks again Take care, Beverly

Thank you Gena for your reply and for your best wishes and prayers. This has been such a difficult time for her. The salt water Nicole drinks is made with Celtic salt as is what she adds to her food. Nicole's problem presently is a constant battle to keep fluid to stay in her. Licorice is something that she has used. Beverly

Ernie, thank you for your suggestion. Nicole has tried licorice - sometimes she adds it into her regimen. She has never taken only licorice. In fact she was taking licorice on top of the florinef just recently but stopped it because it was spiking her blood pressure too high. She does not take salt tablets but she uses salt water. If you wish to read below about her salt intake. ( I rambled on a bit in this post) Nina, thank you also for your imput. Here and there Nicole has tapered down on the Florinef and I know she has at least tapered down to 1/2 pill and later today I will ask her if she has ever tapered off entirely. Maybe cleaning her body out entirely and then trying it again could be useful. Yet sometimes I wonder if she had just stayed on that initial one pill and did not taper off - maybe she would have not had a relapse and then another, etc. I read a post once here that someone had to go off their florinef to do some testing in a hospital setting and when she went back on the florinef it didn't work anymore. Nina you are so fortunate to be a good florinef responder. Have you always stayed on the same dose without changing it- like not tapering down? I knew someone with POTS who never changed anything that she did and never relapsed- her condition barely wavered. I have lost touch with her- I knew her for about two years. But without fail she took two florinef each day, took salt tablets each day even though she had to gag them down, and once a week she had IV saline at home. Knowing what I knew of her - not ever wanting to toy with what worked I wouldn't be surprised if she was still sticking to this exact regimen. Florinef is not totally INeffective across the board for Nicole. It seems to be rather ineffective for the hypovemia - but it keeps her blood pressure up - sometimes it's okay high but sometimes too high even though that seems to be a contradiction according to my nurse friend- the low fluid and the hypertension but without the florinef Nicole's blood pressure would seriously drop. Because of all the salt and florinef Nicole is monitoring her blood pressure regularly and today I bought her a monitor that is automatic and easier to use. Nicole was in really bad shape just 4 weeks ago but she is coming along slowly but surely. It is because of this fantastic website and all the salt suggestions (cannot express my gratitude enough) that Nicole has increased her salt and she thinks that this extra salt might be helping her hypovolemia. Now that I think about I am wondering if perhaps Nicole is one of those who needs a great, great high dose of salt to make the Florinef work better. Plus someone else suggested that salt is more effective when taken with food and Nicole has noticed that if she eats a good bit of food late at night and drinks the salt water with it when she wakes up her morning she is better than if she doesn't do this routine. (What prevents her from eating is when the adrenaline-y feeling is awful- she can hardly eat. When you think about it people use adrenaline to suppress their appetites). Anyway I have gone on long enough-for now. Thank you again for your imput, Beverly

I'm doubting that this exists and I know it's a shot in the dark but I thought I should ask. Have any of you in your dealings with your various (maveric) POTS docs learned of another drug similar to the way Florinef works? Like a Florinef clone -so to speak? At first Florinef worked great for Nicole- it was amazing how one pill could take her from three and a half months of laying down with a zillion symptoms and no dx to up on her feet and very ambulatory with 75% reduced symptoms. Anyway after 8 years of being on Florinef and tapering down when she felt better and then having to climb higher and higher with each relapse - now she is on 4 Florinef it doesn't seem to be effective at all. Presently Nicole is about maybe about 15% improved from when I first posted on this forum 3 weeks ago which we could possibly attribute to the week of IV saline, increased salt intake (thank you all for the repeated increased salt suggestions) rest, and time. Also Klonapin seems to be helping her nervous system to be somewhat less haywire which in turn might be giving her body some kind of break thus allowing it to heal. She still, however, is bedridden. Plus since she stopped the IV saline the adrenaline-y feeling came back but not as bad as before but still lousy. We thought at first the Klonapin was completely responsible for the reduced adrenaline-y feeling but then when she got on the IV saline that wired feeling seemed to really abate- it was a major relief for her to have that gone. But now it's back and seemed to have returned on the heels of finishing the saline. It's a symptom that she finds most intolerable - the wired yet tired thing. We, of course, cannot be positive that the saline was indeed responsible for the abatement of the adrenaline-y feeling. Nicole, however, might like to try another few days of saline to see if the adrenaline-y feeling abates again IF her local doc will allow it. She's already asked him by telephone and he is maybe considering it for maybe next week. At the very least another saline "trial" will provide her some "information" while maybe giving her body another rest from overcompensating in a zillion, crazy ways and thus perhaps ultimately provide her some extra ground and even if it's only a little ground more she'll take it gladly. She's also considering a beta blocker after what all of you said about how it's helped you. There certainly are many choices. For that we'd contact her neurologist to see if he'll recommend one for Nicole. Thank you, Beverly

Kathleen, Sending you wishes for the highest success possible on your surgery. Beverly