heathmcev

Me too... totally awful in the morning. I'm going to try the V8, kayjay... sounds like a good quick boost. What I do that has helped is gentle stretching before I even lift my head off the pillow. I stretch my arms over my head as far as I can and try to lengthen my body. Then roll on my side, top leg bent, and reach my top arm back behind me - it stretches the spine and really seems to help my body prepare to get up. Still tough, but better...

Hey everyone,

Thanks so much for your replies & encouragement. It is a federal program, of course - but since the SSA offices are local, if you are in a small state like mine, the odds are pretty good that I'll be the first (or one of the first) people they've seen with my dx's. I have met with an SSDI attorney in my area and he told me that educating the reviewers will be our biggest obstacle (he hadn't seen my dx's before either).

Also, once it gets to the hearing phase, Delaware's judges are tough - 3 of them only have a 23% approval rate and the 4th one is on par with the national average 63%... so you just have to hope & pray you get the one good judge!! oh well. i'll just do the best i can to pull everything together!

best,

dizzyde

Has anyone applied for disability in Delaware? If so I'd love to pm... i've read that it's one of the toughest states, and i'm just starting the process.

Thanks,

dizzyde

My EP has brought up that guy's work with me. I think the jist is that hardcore cardio exercise helps enlarge the heart, which will in turn help our symptoms in the long-run, and stop the deconditioning which we so often encounter as a result of having POTS. Don't quote me on that as I haven't seen the study, but it's what he suggested the study says. Even the thought of me doing cardio right now is laughable since walking the dog wears me out!!

When I asked my POTS neuro about the study he said that it's a good concept, but with my fatigue levels & adrenal insufficiency I have to be careful not to deplete my reservoirs... so he recommends small bits of exercise throughout the day rather than going full-on all at once.

If you do find Dr. Levine's study please post - it would be interesting to read.

dizzyde

I'm 35 and my night sweats started maybe 3 years ago. It's definitely not menopause or med-related (everything i'm on has changed but sweats remain). I usually sweat around my thighs, chest & back of the neck. Definitely unpleasant! My POTS specialist just shrugs & tells me it's part & parcel of the whole thing & our wacky temperature control.

Can't we just use the stop sign w/ "POTS" instead of STOP? I don't know who originally came up w/ it but it's fabulous! I'm a graphic designer... I could convert it into vector art for logo use...

I had absolutely horrible prednisone reactions in the past and refuse to ever take it again - but have had none of those side effects on fludrocortisone. I did ask about that when I was rx'd it and the Drs told me it was a different type of steroid. I'm also on hydrocortisone which also has not produced any of the prednisone side effects.

I have experienced weight gain and "puffiness" - neither of which I'm pleased about (esp as summer's arriving)... but as others have said, the positives outweigh the negatives (lol - no pun intended!). I have had almost NO orthostatic hypotension since starting it - which is huge!!

good luck if you decide to go for it

dizzyde

I did the Rave Diet (www.ravediet.com) a few years ago at the suggestion of a cardiologist. Did it for 12 weeks. It was cleansing as well as to test me out for any food intolerance. I lost like 12 lbs (only to regain them once the diet was over)!! It was a challenge to figure out what I could actually eat since it's basically vegan with absolutely no white foods (sugar, white flour, potatoes, etc), cheese, egg or other dairy. After week 2 I got used to it and actually started craving veggies for the first time! I can't say that it helped my POTS symptoms though. And it made eating out VERY hard... there would be maybe 1 item on a menu I could eat if that.

Cool! I wonder if this would help us IBS folks...?

How awful. I'm so sorry to hear this. One of my POTS drs did tell me a few months ago that a lot of hospitals don't want to treat POTS because "it's not a money-maker". Majorly ***** to hear that from our end!!

I live in Wilmington DE - 20 mins south of Dr Goodkin and am happy to chat about who I see. I have an EP in DE & POTS neuro in Baltimore. I haven't been able to find another POTS dr in Philly, but in a town with so many good hospitals there must be someone! Can Goodkin reccomend someone new? I'd think he'd have to at least have in idea for all of his patients - he doesn't sound like the kind of Dr to leave people high & dry. Pm me if you want to know who I see.

best of luck to you. (((hug)))

Dizzyde

More than anything I've learned to trust *myself* through this process. Before getting all the dx's I have now, I always had a gnawing feeling that there was more happening -- things that hadn't been figured out. But it's also so easy to hear everyone saying "it's always something with you!" and believe it. Since the Drs have proven that it's not all in my head I have become totally trusting of my own instincts!!

I had scalp tingling before going on mestinon and my ans specialist didn't know why it was happening but said he wouldn't be surprised if pots was causing it. As for mestinon side effects - I had twitching thumbs for almost 2 weeks (a bit disconcerting) and major gi upset on the timespan version. I take lower doses of the non-timespan version now throughout the day to avoid upset.

I hope your side effects subside. I find there are almost always SEs that aren't in the write-ups! Especially for those of us who are so uber-sensitive to meds. Best of luck with it.

-dizzyde

Hi kayjay,

I've been on mestinon since October. Was at 60 mg for 2 months (worked up to that slowly) then my dr up'd me to 180mg Timespan. Apparently mestinon has a very short half-life, so if you take it 1st thing in the morning, it's out of your system by afternoon, which was why I was feeling awful from about 3pm onwards. Even tho I increased gradually to the timespan, my body couldn't tolerate the higher dose. I had horrible abdominal cramping and gi problems - too bad to just deal. I went off the mestinon completely for a week to get it out of my system, then slowly went back up to the original 60mg of the non-timespan pill. I now cut that in half so I'm taking 30mg at breakfast & 30mg at dinner to keep it in my body most of the day. Seems to be working, and I may go up to 30mg 3 x/day just to see what hapens.

One other wierd side effect that did go away -- my thumbs twitched for the first 2 weeks!! Was certainly a minor thing, but I was glad when that stopped

Hope this helps and that you have luck with it!

-dizzyde

Me too. My family swears I'm a human barometer. Fronts are known to make migraines worse but I get all of my POTS symptoms in full gear as well. I don't get the mechanics of why this happens but would love to know more.

-dizzyde

Totally relate. I have good days & bad days when it comes to brain fog but have word-finding issues pretty much everyday. My family is used to me referring to just about everything as "that thingy" and amazingly, usually figure out what I'm saying! It does get super frustrating and I did break down an cry at one point last month - so I get how hard it can be. Also especially hard in social situations when you dont want to sound completely idiotic!! Hang in there... You're certainly not alone.

-dizzyde

Ok, this may be a dumb question, but how do you all decipher abdominal bloating due to slow gi motility vs from abdominal pooling? My dr and I are assuming I have abdominal pooling since I don't pool in the limbs yet have unexpained low blood volume. I am always bloated and also have ibs and slow motility.

- dizzyde

I get this too... but have never associated it with POTS until reading this now. I'm fine on my back or right side but the left for me is a sharp pain and my breath is sort of taken away until I roll onto my back. I dont think the drs will be able to answer this one though - seems like an unfortunate candidate for the "medicine hasn't caught up with that yet" response I hate so much! Hopefully someone's cardio can shed some light. I'd love hear theories too!!

-Dizzyde

Hi kayjay - I've been on a super-low dose of cymbalta for a year now with no interference. I don't think it helps or hinders my pots symptoms (but does help my depression!). Antidepressants are so insanely individual... can't hurt to give it a shot. good luck with it

dizzyde

I'm definitely in... and need buddies to push me. I've never been one to feel good after exercise - always just worn out (even when I was in great shape). I know I need to do it though. I always at least walk the dog, but some weights would be great. I get super dizzy doing yoga, so my mom gave me a qi gong DVD for christmas (all upright!) which I'm excited to try! I'm with those of you who want to lose lbs... ever since I started all the meds I can't seem to shed weight!

just sending you hugs persephone... and hoping you have a quiet soft space to be in today

Thank you everyone for your wonderful responses... I feel so much better just having the support of people who understand where I am coming from! I feel very fortunate to have this sounding board & support system.

Peaceful, Healthy Holidays to you all!!

~dizz

Ooh... I like that approach, firewatcher. I am one who avoids confrontation at any cost, so to really be able to plot out my words carefully on paper is less intimidating - not to mention avoids me having to worry about his immediate reaction. Also places the ball squarely in his court. Thx

It's amazing how much of a weight I feel has lifted in just talking with you all thanks.

tearose & persephone - what wisdom. you are absolutely right. trying to get up the nerve to call him is tough. I'm afraid he'll act the same way - but if he does at least I'll have my answer and can move on to find another doc. I'll just have to steel myself. I used to be have such a fighting spirit, but some days it's hard to find my 'fight'.

KeXia - I'm planning on calling the cardio tomorrow to let him know what happened. He has a big ol' ego too, but at least states quite honestly what is and isn't "in his jurisdiction", which I respect. He's been sending his notes to the neuro even tho he hasn't gotten any in return.

erica - my mom had the same thought (after she got past wanting to call him herself to bawl him out) - that the doc was having a bad day and i got the brunt of it at 5p on friday of what may have been a long week. and i understand that - we all have crap weeks. but as you say, i'm the client. it's really hard to remember that and hold them to it sometimes.

i still am not sure how exactly to approach the doc about all of this. he made me feel like i was such a strain on his time just in our short conversation last friday that i feel like i'm just a pain in the *** if i have to call for anything now - even to discuss what happened. i think he started to feel a slight twinge of guilt towards to end cause he started offering to get my records to the cardio, but it was all abrupt and i was clearly in pieces by that point.

Sounds cool - what type of exercises are you focusing on, and at what level?

I am having an horrible time! My main POTS dr (autonomic neuro) called and yelled at me on the phone Friday! I have basically been in tears since. I had left a message with his assistant, letting him know that my cardio wants to switch up the meds, and to call me if he has a problem with any of it. He and this cardio had agreed to work together in my treatment, as both have been treating POTS for 20-some years (sounds ideal, right?). So he calls me and says angrily that he "doesn't have time to argue with another doctor". They've never even spoken!! Nor did I ask anyone to "argue" - I was trying to do my due diligence and make sure everyone was on board with the change. I didn't want to upset the apple cart... well the apples are rolling around in the street now! He said he also got denial from my insurance to have the insulin response test done that he wants me to have. Shouldn't a Dr know that (1) that's sort of par for the course w/ insurance, and (2) that it's NOT the patient's fault???? Plus, I went out of my way to do as much leg-work for him as possible in trying to get the test approved so as no to waste his time. To the point where the insurance company actually said to me that I had to let the Dr's office do the rest. GRRRRRR!!!! So did all this require yelling?? Sort of ironic when he's the one who's been lecturing me on not getting stressed out since it worsens symptoms. Now he's causing the stress.

I have been vacillating between anxious energy and bawling all weekend. I'm trying to get angry but it's hard. I can't imagine why he needed to take things out on me. I actually broke down and cried while on the phone with him, which I've never done w/ a Dr before. But then I've never been treated this way! And the worst part is that he's the one who I've felt best about through this whole thing. He's the major POTS Dr in the area and up until this moment I felt like we'd been getting along well and that he's really been helping. It's clear, though, that even though he said he is willing to work with my POTS EP, he really wants to run the show himself. But he's not a cardio, just as the cardio's not a neuro! Forget what's best for the patient. In fact, as proof of the point, he had me go through a horrible withdrawal from Cymbalta just to prove whether or not the cymbalta was exacerbating my palps... and after a month of withdrawal symptoms, the tachycardia and palps were the same as ever. The cardio told me later that he could have said straight off that the cymbalta wasn't effecting the palps. I never even told the neuro this because I didn't want to seem to be second-guessing his expertise. Now I have seen first hand that it's good I didn't tell him this... God forbid his wisdom be questioned!

so now I'm wondering what the heck to do. Part of me thinks I should suck it up and keep going to him, but the rest of me wants to try another POTS guy in a neighboring state (Dr Goodkin - I think he's in Media, PA? If any of you like him and think I should give him a try, please pm me!). I feel like the rug's been pulled out from under me.

*sigh*

dizzyde