Question About Progression

[Agreeky]

So I have posted in this forum a few times now. I have also read over many posts, but I am still confused. My symptoms have been coming and going for 13 months. With each few month period bringing a weird new symptom. Am I slowly progressing to the point of full blown illness, or can you have mild dysautonomia? My neuro says I have fairly mild symptoms, except for my breathing. I have read other peoples post where they say they became bed ridden and I am pretty worried. Any opinions or stories would be great. Thanks.

[spinner]

May I ask what breathing problems you have and what triggers them?

Ive been dealing with flares for 2.5 years, and even now im learning how to deal with/manage/prevent them.

One of the worst, i learned recently, is MSG, and its basically a flavor enhancer in almost EVERY processed food you

can think of hiding under all kinds of names.

I mention it because i know it causes all kinds of breathing problems by itself.

As far as new symptoms, my most debilitating one that was later onset is heat intolerance. I could handle

some amount of heat before but now i take a lot f care not to get overheated whatsoever. My greatest concern

is getting caught in traffic on a hot day, or the electricity going out--well i could sleep in the basement i guess.

[Agreeky]

Spinner I really have no idea what triggers my breathing. I cannot pinpoint it. I was eating a lot of frozen meals on weight watchers around the time I got sick, so that could fit your theory. I eat pretty healthy now though and still having breathing issues. My issues include forgetting how to breathe, feeling suffocation in my throat, and a weird sensation on my left side. Almost like air going through a cob web.

[MomtoGiuliana]

I think it is impossible to predict the course of your condition. however, the fact that you are diagnosed greatly reduces the likelihood that you will progress to being bedridden--IMO. I believe I became bedridden b/c I had no diagnoses, for years, except for a misdiagnosis of anxiety at one point. So I never had access to treatment until I was severely disabled at which point I was diagnosed. Hopefully you have access to a specialist who can work with you to find the best treatment before your symptoms escalate in severity--if that were to happen. Fortunately there are many different treatments available to try.

It is definitely possible to have only mild POTS and for it not to become severe. We are all different.

I have also had that breathing symptom you describe, BTW. The sense of air going through a cob web describes the sensations I get, perfectly. I could never figure out a trigger for it either. I have not had the symptom for a few years now however. hopefully over time you will get this less often.

[Agreeky]

Thanks for that. I do have a specialist now, but no treatment yet. I have to wait until my ttt, and then we will start pursuing the causes. I guess she is one of the best in Boston. I actually just met her this week so it took 13 months for anybody to take me seriously. I was hinted by many docs to go see a psychiatrist. I started to break down to my former lung doc, he told me I do not have a lung disease and I should take my crying to a therapist. Hate him to this day. Anyway I am glad you understand my breathing sensation! So hard to describe. I hope you are feeling better now!

[margiebee]

I'm in the same boat, my symptoms are mild at this point, I am able to live a pretty normal life with slight accomidations. I have actually made some improvements and there were times pre-diagnosis when I was much worse off. But I keep having new symptoms pop up, like headaches and nausea. I have been told that its usually not so much a progression but a pattern of improvement and then flares and then improvement again.

[Agreeky]

Margiebee so some of your symptoms got worse before getting better? I noticed my blood pressure issues getting slightly worse. My blood pressure actually goes up and not down? Also I have weird vertigo issues that have gotten worse. My GI issues come and go though as do my breathing issues.

[margiebee]

I would say that probably my worst point ever was about a year ago, I was actually passing out which normally doesn't happen to me. Since then I have improved quite a bit as far as symptoms and my functioning, it seems to have been both a random improvement that my exercise routine has contributed to. My BP has also started going up instead of down, my POTS doctor said that's still just a dysautonomia thing but my HR increase has improved dramatically, from an increase of around 70 to around 20-30 upon standing.

But even before I was diagnosed I always noticed I'd have about a month where I'd be almost completely fine, and then a flare. And then I'd be fine again. For me it doesn't really have a "progression" type pattern its just up and down constantly. Now that I'm getting treatment hopefully it'll be more up than down but my doctor said this will pretty much be how it goes, he said it shouldn't be progressive at this point as I've had POTS for almost 10 years without any serious progression.

[Agreeky]

I am glad to hear you have improved again. Not knowing how this will play out is driving me nuts! I wish I knew what triggers it and what improves it.

[looneymom]

I'm glad you have found a doctor that specializes in dystonia. Hopefully, you will not have to look for another doctor to treat your condition. It took about 10 months after my son got sick, to get his POTS diagnoses. My problems was that he was 11 and most doctors don't want to treat this age group. They also want to believe it's all psychological. After he was put on the traditional POTS medication, his symptoms got worse for about 4 months to the point of being bedridden. Then he gradually came back up and was able to stand up and walk around for the last three months of last year. In January of this year, he caught the flu. He has not been able to stand up or walk again since he has had the flu. The cardiologist has told me that POTS can be unpredictable. Hopefully the normal line of POTS medications will help your symptoms. Be patient and try them first. POTS affects everyone differently. However always keep in mind that something underlying could be causing your symptoms. If you feel like this could be a possibility, mention it to your doctor. Because my son his been on his medications for over a year and has not made progress, the cardiologist is doing some autoimmune testing. This is the next step to go to after you have tried medications that have failed to keep you going. Hope that I have not overwhelmed you and I wish you the best of luck. Stay positive and motivated with your treatment plan. You'll soon have one that will hopefully get you up and going again. A good support system also helps. Keep us posted.

[Agreeky]

Thanks looneymom. Sorry your son has had these struggles. Hope he finds answers soon. I am on no meds yet. Guess they want me to do my autonomic testing first. My first symptoms were tingling in my left hand foot. Had multiple MRIs and other tests. It all starting while I was running. I still wonder if it is something in my spine. They keep MRIng my brain but not spine. I definitely think there is some underlying illness going on. I will update if I get answers. Thanks for sharing : )

[looneymom]

An mri of your spine would be worth while. My son has had one. Before he was diagnosed with POTS, he started having pain in his lower back, hips, knees, and ankles. This pain has never gone away. Our cardiologist is running the blood work to check for HLA B27 antigen for a condition known as AS. Sometimes this is common with POTS patients. Might want to mention this to your doctor if you think this might be worth looking into. I wish you the best and I would encourage you to walk or ride a stationary bike to keep blood volume up. Keep asking questions and keep us posted.

[Relax86]

I am glad to hear you have improved again. Not knowing how this will play out is driving me nuts! I wish I knew what triggers it and what improves it.

This part can sometimes be my biggest struggle. I recently started meditating more deeply and somewhat giving up the knowing and trying to embrace my body's attempt at regulation. Thanking myself for being strong thru tremendous change; as we all are on such a roller coaster of symptoms and dysfunction. The meditation and change in thinking has helped. I only ask it to help for the minute. I'm not sure what the next hour will bring but I can't expend any more energy worrying. I also improve and change. Can't say that I'm progressing, just riding the ride. Good luck

[Agreeky]

Thanks Relax86. I try very hard to stay calm. Im an extremely high stressed person. Been trying though, I do yoga, reiki, and acupuncture. Although my acupuncturist only gives me 20 minute treatments because I got crazy just laying there lol. I appreciate everybody's input!

[imapumpkin]

I functioned for years not realizing how debilitating POTS really was until i had a flare up, so I guess you could say that I had a mild form until last year. I had been diagnosed with POTS but all i had was some tachycardia and was slightly more easily fatigued than most. But I was also working at a pub-- on my feet for 8+ hours a day, running around a huge restaurant and able to exercise 3 times a week for 20 min. before my system crash last summer I was functioning normally and i'm hoping to eventually get back to that. Even so, the doctor says I have a mild case on the POTS spectrum which sounds like what she said to you and she has hopes for me to essentially get better with some intermittent flare ups.

I wouldn't worry too much that you're slowly descending into worse and worse POTS, now that you know you have it and are seeing the doctor, actions can be taken to improve your situation and I'm sure the dr will have some suggestions once she gets the results from your testing. Good luck!

[TCP]

My breathing improved with the beta-blocker and I'm far less breathless now.

[Agreeky]

Imapumpkin, I hope you and Dr. Hohler can make some progress this summer. Do you think you worked out your body too hard? I fear I put too much strain on my body at the gym. Not sure what to do. TCP the at home cardio was not sure if to put me on a beta blocker because of my bp. When I stand it rises but it usually runs pretty low.

[imapumpkin]

thanks! i don't think i overworked it, my onset started after moving hours away to a hot climate, starting a new job and being under a lot of stress. when the flare up started exercise actually made me feel better. i tried to always keep it to about 15-20 so as not to over do it. now all i can do is walk around the block. i have to be a on beta blocker because my resting hr is too high but its a very low dosage so it doesn't bring my already low bp down too much.