Pots Hole...

[ramakentesh]

Well just as things were looking under control and calming down I cop a relapse from literally no where. Im talking at work feeling quite well and all of a sudden my head just feels like its empting of blood. I nearly faint. Since then its been flaring like a treat. From then until the day before xmas I could barely get out of bed (all while telling myself that some docs keep insisting you can just exercise your way out of a POTS hole). Id just got out of a 14 month relapse at the start of last year and had convinced myself that if I didnt fly anymore it would just wax and wane in a more managable level.

First thing I noticed - I dropped 5kgs literally overnight! Explain that! On the Thursday night I ran and then came home and weighed myself - 81kgs. I weighed myself again on the sunday. this relapse started on the monday and Tuesday night i was 76kgs. madness! So Im re-considering the whole blood volume angle in my case. Seems very strange to lose that much weight for no apparent reason. This has got me very interested in the blood volume dynamics and Ill email firewatcher and a few others who know a bit more about this issue.

Im trialling a microdose of florinef at the moment. I had to try something and my specialist is uncontactable at the moment. My GP said that it couldnt hurt.

As for work and my ever looming mortgage im trying not to think about it. I know that this all probably comes back to work stress and I have been under HUGE amounts. What I was trying to prove by taking this promotion Ill never know. Im good at what I do but I know that after time my bosses will get annoyed if I take MORE leave once again. the whole team relies on me as the manager and my higher duties finishs in May. I cant wait.

The most ive ever taken off work for POTS was 2 weeks. I went in one week so bad that I could not even speak! I mean working fulltime, sitting at a desk, going to meetings and being so bad I had to run to my car, drive to a shop, buy two gatorades and skull them and then run back to work just to sit there because I was way too sick to actually be doing anything of merit. But ive worked for 8 years straight with POTS, although in the past it was more managable than its getting now.

I mean what do I do? Quit and go on a pension? potentially lose my house if I cant work out something to sell on ebay?

The last two relapses have been terrible - worse than others Ive had in the past - im hoping this isnt progression because the thing about POTS that I hate is that when its bad it even gets my lying down. I cant relax, feel all weak, jittery and uncomfortable. Even then apparently I only have moderately severe POTS because I dont faint all the time and am not bed ridden.

I hope the florinef helps this time and at least it has stopped the constant urination.

My current symptoms are quite different to in the past:

- Drop of orthostatic BP from 140-150 to well below 110.

- constant urination and thirst

- sudden dramatic weight loss

- extreme and constant sweating like you would never believe. My shirt is constantly drenched.

- diaherra and nausea

- head feeling dizzy all day

- feeling trembly and weak

- feeling kind of on edge

- heart rate hammering away.

And I had my whole family staying over xmas. My mum is understanding but my mother in law wanted me out mowing the lawn and all this telling me that exercise will fix any ailment...

To be honest im not really sure what the point of this post is. I just thought I'd put it out there because I know you guys understand like no others can.

[janiedelite]

Hey, sorry to hear you've been so ill suddenly. It sounds like you're trying everything possible to pull out of this flare, and I agree that the sudden weight loss sounds like volume loss. Have you ever tried desmopressin/ddavp? It is synthetic vasopressin and worked wonders for me at first but then caused worse hyperadrenergic symptoms as the weeks passed. But it could help you regain some of the fluids lost, although it sounds like you're sweating quite a bit out...

As far as work is concerned, you've certainly pushed through this stuff in the past. But it may be a good idea to check into a long-term disability policy, if you don't already have one and if they're available in Australia.

I hope that this flare ends soon!

[ramakentesh]

Thanks for the kind words. I feel sorry for my wife as she had to cancel a few social things over the holidays because I was once again too ill to go...

[Dizzysillyak]

Sorry to hear you're feeling puny rama.

Have you seen a doctor yet ? Mine totally surprised me when she tested me for h pylori and

parasites. I'm not saying you have this. Just that doctors will look for causes we may not think of

especially when we're sick.

As for dropping weight, I do this very quickly if i've been burning more calories than I took in for

a few days. I just make sure I eat enough calories now. I was thinking it was a detox.

I know it's easy for me to say but try not to worry about this. Just do what you can and be good to yourself.

Tc .. D

[brethor9]

Rama

I totally feel for you and can sympathize!!! I am going through the exact same thing.....I was doing really good up until an episode I had just before Christmas....I stood up fast....got this really huge vein pain in the right side of my neck....heart rate and blood pressure went through the roof.....felt like I was having a stroke....since then nothing has helped or made the severe head pressure/ dizziness stop....havent changed my meds....tried a beta blocker for a week but its just making everything worse and the doctors dont seem too concerned......no ryhme or reason to the change but I now feel like I havent made any progress at all so sorry you are going through this....it must be a huge letdown after being in remission for awhile.....big hugs!

Bren

[firewatcher]

When I get bad, I can lose 3.5 kilos in an afternoon. I have to weigh myself daily to monitor my fluid status. DDAVP is the only thing that I've found that stops this, and then only while it is working ( about 7 hours.) I'm sorry that you are doing so poorly. Can you think of any trigger? As crazy as it sounds, you might try liquid diphenhydramine (Benadryl.) When I was at my worst in '07, that helped take the shakes down to a manageable level and took the anxiety/edginess down. I took a full dose, every 4 hours. I knew when it was wearing off by the return of the tremors. That constant dose would sedate most people, but it really helped me, it might help you get through your work day.

Good luck!

[Yolaclover]

Ugh, hate to hear this, you were coasting for a while there!!! Try some of these things people mention and hope that this is a total fluke and not another long relapse.xoxxoo

[ramakentesh]

Thanks guys. Yeah maybe the florinef is working a little well at atleast I dont feel as out of it this afternoon. Still not great though and I kinda know that if Im this bad at home Ill be worse at work (8 hours with no let up). Im supposed to be back Tuesday.

The remission was basically just under two years although this time there were a number of minor relapses. The longest remission Ive had thus far was between March 2006 and October 2008 - over two years.

My relapses can vary from 5 months to 16 months. Im hoping for the former!

The blood volume thing is interesting. Aldosterone.

[Chaos]

So sorry you haven't started feeling better yet from this latest flare. I think that's one of the most aggravating things about this "syndrome" is the total unpredictability that goes along with it. It seems that if you have a chronic condition that is more stable you can eventually adjust your life around it and make the most of the situation. But with this stupid thing you never know from minute to minute what's waiting for you. I know I can be functioning at 75-80% of normal (except for exercise level) and be going along fairly well (never normal but close enough to think I've whipped this thing) and then WHAM! The rug gets pulled out from under me and I'm back to not being able to stand up, breathe or walk.

I work 20-30 hours a week, but it's all on my feet. Weeks like this one...I'm lucky to get in for 2-3 hours and then I'm feeling brain dead and wiped out. Luckily I'm not the sole supporter for my family. I can't imagine how much stress it must add to your situation to have all THAT responsibility on top of already feeling badly.

I can relate to your worrying about disappointing your wife. My husband is terrific but it's the same way when I'm so frequently unable to attend activities that he'd like to participate in. Sometimes he'll go ahead by himself or grab one of our kids to go with him. His mom lives with us too so she's usually up for doing most anything. Pretty sad when an 85 y/o on a walker can do things I can't.

And while my husband is so very wonderful and "gets it" better than anyone else I know, it's still not the same as being able to come to this site and have people understand at the "gut level" just how frustrating this condition is. While nobody on here can cure you it's awfully nice to have a network like this to fall back on when you find yourself needing support. The breadth and depth of knowledge of people on here is remarkable too and has provided a lot of practical knowledge to help me with all of this.

So, again I send hugs and good thoughts and hopes that you'll turn around here in the near future. Maybe all that exercise will help you get back on your feet faster.

[ramakentesh]

thanks Chaos - appreciate your post and it mirrors my own experience on many things.

[jangle]

Man that stinks, especially with all the outside stress that's inflicting itself on you. Give your mother in law a day in the life of POTS and I bet she'd start mowing your lawn for you thereafter. There's gotta be some type of medical reprieve offered at your work, and if not that's really dumb. I mean I guess I'm not well experienced in the real world but there's got to be some type of mercy in the case of illness.

Obviously I'm not a medical doctor but I don't think your condition is going on a downward trajectory, it seems like you've had remissions and relapses in the past, hopefully it's just another relapse and it'll be over soon enough.

Potassium + salt + fluids + florinef, hopefully gets you feeling better.

[HopeSprings]

I wish I had more to offer than "I'm sorry." I hope this is a brief, freak thing that will pass. The unpredictability and illogical nature of this stupid disorder is most frustrating.

[MomtoGiuliana]

I'm so sorry to see that you are still in this hole. It does sound like blood volume is involved. I know when I have a major flare, it often comes quite out of the blue. And getting IV saline helps a lot--as far as just making me able to stand and my heart rate not going through the roof. I also drink coconut water/juice now rather than gatorade. It has a lot more potassium and does seem to help me feel a bit better. (It is more expensive of course). I hope this passes quickly for you and your doctor can see you soon and evaluate some treatment options.

[redoctober]

rama:

How much Florinef are you taking? I find that just under .0125 helps me out quite a bit. If I try to skip a dose for a few days, I tend to feel much worse for some reason.

[Katybug]

rama,

I am so sorry you have not recovered yet.

I have to think your on the right track with assuming this is a related to issues with your blood volume given the sudden weight loss. I can not think of any other thing that could cause that kind of weight loss. Can you speak to the doc that put you on Florinef and see if YOu can get IV fluids (I know there are some things you have said are not an option for you in Australia but hopefully this isn't ne of them)? If it helps, then maybe that can confirm that it is a volume issue and will allow you to get back on your feet (no pun intended.)

You are in my good thoughts.

[Katybug]

rama,

I forgot that you have AS when I made my previous post. The Immunologist I just started seeing just got some of my labs back and found that I have some readings that indicate chronic immune mediated inflammatory disease (of course it doesn't fit any known autoimmune disease but it is definitely there). He thinks this is probably the underlying cause of most of my symptoms and linked to the POTS issues. He has not started treatment yet (says he wants to think on the best option) but is considering anti-tumor necrosing factor drugs ( http://en.wikipedia.org/wiki/TNF_inhibitor ). Is it possible that the inflammatory disease process from your AS is contributing to your POTS flare even if it doesn't feel like it is linked? Have you tried this class of drugs to help you stay out of flare ups? Just thinking out loud...

Katie

[ramakentesh]

Hi. Yes my rheumatologist thinks AS and POTS must be linked somehow in my case but he is unsure how. I havent tried TNF alpha medication as my AS has been pretty good the last six months or so. he said that if it started to move up my back it may be an option.

But if you do trial TNF a blockers please let me know as I would be very interested in whether they improve POTS.

Thanks,

[Katybug]

Will do. Just in case it helps, the lab test that we did was for C4a (a specific part of the immune complement system). My levels were off the charts back in 2008 and they are still off the charts. This is a protein that releases anaphalatoxins including histamines and causes chronic inflammation. If you had asked me 3 weeks ago when I had the blood test, I would have told you that my joints were feeling pretty good but the last 5 days I feel like someone has being beating on me and the blood test reflected a severe level of inflammation even though my body didn't feel it at that moment. The doc is hoping to use this C4a as an inflammatory marker to track my status. He says it will be an experiment but that, in theory, whatever treatment we choose to reduce the chronic inflammation should reduce my clinical symptoms and reduce the C4a. Flares would then spike the C4a and we would know to make adjustments to meds.

[ramakentesh]

Fascinating stuff. I wish I could find a doc like that...

[Annaliese]

Hi Rama. You are one tough man, working so much when you are ill. Its interesting you mention aldosterone. Your symptoms seem very similar to mine so i always follow your posts. I was just at the endo yesterday begging him to test my aldosterone levels but he wouldnt (plus he charged me 450). I even showed him the article which shows the paradoxical low blood volume an high angiotensin II in some patients. I think in my case an autoimmune disease is knocking off some process which controls blood volume. I think thirst strongly inicates low blood volume. We feel thirsty so we drink but why are we constantly peeing everything out all the time? I think the low blood volume causes the sympathetic activation and puts us in shock mode. At night when the symp system 'sleeps' all sorts of weird stuff happens because of the low blood volume. Do you have nighttime issues with flushing, palps and twitching? Since i started florinef every single nighttime symptom has disappeared. Just be careful with your dose of it. It hangs around for ages. I started at .1 and was fine on day 1 but by day 3 my calves felt like they were going to explode. Ive since settled on 1/4 tab (0.025). Sorry things arent going so well for you at the mo. Could it be the heat? I cant wait til march when it gets cooler. My husband and kids are currently on a beach holiday but it was too hot for me to go.

[ramakentesh]

Hi

Yes its interesting you say that. My sleep and lying down-related issues are always worse when I think my volume is low. Medications that help my standing up problems also improve those sleep-related problems as well for what every reason. This occured with two alpha agonists that i have taken (DHE and butchers broom) and with florinef.

Florinef has moved me from being very bad to just bad so I guess I cant complain. Ive taken some time off work now because i still cant put a straight sentence together. I did infact drive down to the shop yesterday to get some dog food which was exciting. i even had a four sentence conversation with someone before starting to feel 'droppy' and having to leave.

Many times ive wondered whether id be better conversing with people while running on the spot LOL.

its just like that 'thing' that holds you up just cuts out in me.

the fact that I dropped so much weight is quite surprising. Im sure ill tell my docs and they wont be overly concerned but it is pretty weird in my opinion. 5kgs overnight! You cant metabolise muscle or fat that quickly. it has to be volume.

[Chaos]

Katybug- Not to hijack the thread but did you have a high ANA or SED rate that made the immunologist order the C4a?

[icesktr189]

Sorry you are having a rough time, I think that is the worst is going back and forth from being good to very bad.

[Katybug]

Chaos,

All the standard automimmune testing was completely normal. I was tested for C4a in 2008 due to suspected tick-borne illness (they've linked high C4a to potential Lyme infection). Because it was high previously, this Immunologist wanted to retest to see if it was a one time anomaly or if it would still show high. I'm surprised more people with suspected autoimmune are not tested for it as it is known to be either high or low with quite a few autoimmune issues (SLE, AS, psoriasis, RA.)

[kayjay]

Hope you are out of this hole soon. I think a lot of us understand how hard this is for you. Just a thought about the obvious - have you had your potassium levels checked recently? I had a huge flare when my salt/potassium got really out of whack. I was told by my doctor at Mayo to have it checked ( 24 urine) in the future. I lost a ton of weight very quickly and was urinating constantly. Might be worth checking your current levels if you haven't recently.

Hope you are on the upswing soon. Don't lose hope!