toomanyproblems

How high is your HR going?

As a matter of safety I feel I should point out the main active ingredient in RESTORE is lignite, which is basically coal. There are no convincing scientific studies that show lignite helps tighten cell junctions in the gut in vivo (in people). In addition lignite may not be safe for human consumption.

As an aside, an abnormally high titer ANA by itself doesn't always mean lupus.

Thanks!

Hi Firewatcher, what mast cell activation disorder drug did he prescribe for you? Thanks.

I had waxing and waning POTS for six years before abruptly starting unrelenting symptoms for the past four years. I have hyper POTS and, while I already had POTS, I got off the Effexor I was taking for pain, which is similar to Cymbalta, an SNRI that inhibits the reuptake of norepinephrine, for that exact reason. It's not outside the realm of possibility that the Cymbalta at least fueled the fire of the OP's original POTS symptoms. It's hard to predict what will happen now. I didn't really have improvement when I stopped the Effexor but I was well into it by then. AYX, I wish you luck.

Some people simply lack an adequate signal for thirst by nature. I've been like that since I was a child. I would get so dehydrated my pee would burn coming out and even as a kid I somehow knew to drink more to help it because I never mentioned it to anybody. I'm 63 and still like that. I very rarely ever actually get thirsty. I have to force myself to drink. I have my whole life. If I get distracted from it I just forget to drink. OP if you are getting so nauseated with little water or food you might look up gastroparesis to see if symptoms fit or ask your doctor. It's common with dysautonomia. I have that.

What helped you?

I'm pretty much bedridden at this point.

I have bad dysautonomia but I don't have diabetes (the one fricking thing I don't have it seems). I was on that Wahls' ketogentic diet for a while, in desperation to feel better from various problems. My PCP did not want me to be in ketosis. I ended up in ketosis a lot despite not trying to so I had to eat some fruit or other carbs (no straight sugar type). I left that FB forum eventually because the people were really judgmental and didn't seem to be able to think for themselves. As it turned out Dr Wahls herself found through study that it was not good for people to be in ketosis all the time short of some reason like epilepsy where it's worth the risk. So last I read they were just recommending occasional ketosis instead of raging ketosis all the time. You also apparently have some genes that determine how well you do on different diets. I landed right in the middle, with carbs not making me gain or lose any more weight than fats and protein. So that may be a factor for you. So I guess after all this rambling, my message is, don't always listen to those people of the forums. If I were you, I would find some complex carbs or something that doesn't trigger your blood sugar too high and add a little of those until you are only in mild or occasional ketosis. You can help prevent your blood sugar spikes by eating protein, fiber or fat before the carbs. It's called protecting your carbs.

I don't have anything useful to offer except I'm the same way. My mother was so dramatic over everything that I go the other way. I don't have trouble with Drs blowing my problems off because I've got some things that are easy to see (like about 15 lbs of inflammatory edema on my lower right quadrant on an otherwise light frame) that go along with other associated things. However, I while I'm not afraid or anxious to go to the Dr., I just don't want to anymore. I don't go to the ER either, no matter how bad things get. Each time I live through it, it gives me more confidence to not go the next crisis. As for the regular Drs, they're good but I've accumulated so many things we have trouble trying to sort through what each speciality covers. I've now just melded into one big autoimmune mess that's no longer easy to put into boxes for the specialty areas. The best treatment I've had to deal with all of it is IVIg. I hope further treatments will help more. I wish you luck dealing with your POTS. Mine has just continued to worsen no matter what I do. I have hyperadrenergic POTS though so it's a little different.

Re: interstitial cystitis. IDK about your urologist but my bladder was scoped twice and he saw ulcers and mounds of inflamed tissue. He was pretty sure on the diagnosis. It is a real thing.

I have interstitial cystitis. I think flare ups of that cause mine.

I have this sometimes but I'm wondering what you mean by when your autonomic symptoms are bad. What symptoms exactly?

This is a problem for me. It definitely increases my dizziness and inability to focus my eyes well. I think my balance is so dependent on visual orientation and so overloaded that my visual centers in my brain become overstressed when I read or look at the computer too much. Many nights I get double vision and have to cover one eye to see well. Some days are better than other days.

Whether you did it or not, the half life is pretty short. The effects would be gone now.

I'm on 2g/kg per month. Too early to tell but I guess I'll see. I don't have a lot of options left.

I have SNF and POTS. Also a lot of other autoimmune conditions. I have CRPS that I take gabapentin for and that helps the SNF symptoms. I just had my first round of five IVIg infusions last week. I'm having some known adverse effects but can see improvement in some areas. Not my severe dysautonomia yet unfortunately but I'm hopeful with further treatments.

Mine goes up standing. I'm pretty sure I have the hyperadrenergic form of POTS so this is not uncommon.

Looneymom, what is your friend's diagnosis that she would need all three treatments to control it? How often does she get IVIg? (I just finished my first week of IVIg so I'm wondering about different protocols.)

Prednisone is chemically similar to steroid your body produces naturally, cortisol. Reactions are going to similar to what would happen if your body produced too much cortisol. So it doesn't cause an allergic reaction you'd get to something like an antibiotic or other drugs your body doesn't produce naturally. It's a reaction for sure, but not the kind most people think of. I've been on the dose you're taking and I've had that red face you describe. The dose you're taking is very high from what I understand. I hope you won't have to be on it long and can taper down slowly. That much prednisone for long will shut down cortisol production from your adrenal glands. It will come back but you need to wean off of the pred as your doctor advises. Also twice a day is rough. How do you ever sleep?

I have dysautonomia and gastroparesis. Altho I don't have this, I've read on gastroparesis forums that you can have delayed gastric emptying with intermittent dumping syndrome.

The thing that has worked the best for me to tamp down my sympathetic nervous system when I have chest pains and SOB from my hyper POTS has been clonidine. I'm careful not to take it unless my BP is high enough (diastolic over 80 at least). My BP and HR go from too high to too low both together and separately so it can be a juggling act. Welcome to the group although I'm sorry for the reasons you're here. I wish you luck finding something that works. My POTS/dysautomia has been pretty refractory to treatment.

I know this is an old thread but maybe new people would like to know you can have some weird eye problems with dysautonomia. My list includes but is not limited to, blurry vision, one eye blurry while the other fine, failure of both eyes to converge and focus properly, tunnel vision, and lately, double vision at night when I'm tired. When I have these problems (and I have vision problems every day), they usually go on for hours. I think POTS is one of the few conditions where one gets tunnel vision. Apparently, the accurate tracking and detection of images, and processing the information takes up a huge amount of "brain power." (That may be one reason some people close their eyes when they're thinking.) Lack of oxygen in certain areas of the brain could explain the various, weird eye problems in POTS patients. In tunnel vision, which I have often, especially when I'm about to pass out, it's easy to imagine one's brain is trying its best to compensate by processing the main images directly in front for as long as possible and simply reducing the brain power needed to process peripheral images clearly. I've had pain behind the eyes quite a bit in the past. I think that must be from migraine, as people have noted. I don't recall having it much since starting on Gabapentin a few years ago for my CRPS. It doesn't decrease the frequency of my migraines but it decreases the intensity. An added benefit

I was diagnosed with POTS about three years ago but I feel pretty sure I've had it for at least ten years before now, which would put me at 53 when I first had definite symptoms I attribute to POTS. However I do also have a lot of autoimmune problems so lots of varied symptoms for over 30 years. Also, I recently got a very firm Ehlers-Danlos diagnosis by a leading expert, so I was obviously predisposed to POTS and might've had it for quite a long time before actual diagnosis. I think it's possible to have a POTS diagnosis at 75 but probably not starting then. Lots of things cause dizziness at that age.