toomanyproblems

Well, I'm retired now but my ex-husband is still in the field as an infectious disease specialist and is keeping me up with the developments. While they don't have data supporting some of these off label treatments such as Plaquenil and more logically, HIV drugs, there are trials for the HIV drugs in China and now Spain. I'll be happy to report anything I hear if people are interested.

7 minutes ago, KiminOrlando said:

I don't know that I assuaged your fears. I take Corona seriously, but you and your doctor are the only ones that can assess your risk. My risk is elevated due to age, immunosuppression, and Interstitial lung disease. I think I will be ok. Hope this helps.

Thanks, Kim. I appreciate you relaying your own situation wrt to your location and relation to the Disney exposure.

I know my own risk unfortunately. Like others, POTS did not occur without other problem conditions in me. Plus I'm 66. My roots are steeped in the medical community so I understand the virus as much as is known and what they're saying to do to prevent it. I guess I just wanted people to discuss it in general and read what they had to say more than to be personally reassured but I wasn't very clear on that. I've now moved on to treatment options so I'll be prepared.  Hopefully we can share things here that may help if we become infected.   

So at what point are we allowed to worry about the coronavirus and not be fear mongering? It's pretty clear things are getting way worse. I'm interested in hearing people's plans. 

I think about this all the time because mine tends to be too narrow even lying/sitting down. I don't have a reading this minute but my systolic will often drop and my diastolic may go up upon standing. It's more often less than 30 difference no matter what. Recently I was at a rheumatologist appointment and my BP was 100 over 82 sitting. The nurse said good blood pressure or something like that. I said, well, there's not much in the middle. She didn't act like she knew what I was talking about. 

I'm not sure narrow pulse pressure (less than 30 difference between systolic and diastolic) is common. I have noticed some very narrow pulse pressures when I see TTT results on others so it may be a POTS thing. The least I've measured that I can remember was 12 with a BP of 52/40. 

I understand you want one for outside use but here's the stationary one for inside I got that works well. Refurbished for @149 from Amazon. 

I had my first and only true seizure after pulling in the driveway coming home from voting in 2016. I'm sure it was from stress. I still occasionally have seizure like things, but not like that one.

I hope there will be many people reporting their experience with this so people can gauge whether to try it. My sister and I did it a few months ago. She enjoyed it but I was not impressed. If anything I felt worse after. I also have hyperPOTS.

Again, I hope there are other responses to this so we can get more of a balanced idea of whether it helps some people and is worth trying. 

I have a lot of back problems, including a pretty bad lower lumbar scoliosis, probably from my EDS. I use gabapentin for my CRPS pain and it helps the back pain. It's a good drug IMO.

If spasms are causing the nerve pain to be worse, valium is still considered the best muscle relaxer.

No, but I have it too. A smell of stale smoke. And it's not just when I lie down and my nose stops up but constantly for weeks at a time when I have it. It's been going on for years. IDK if this helps but yes, I have that problem too. 

11 hours ago, whymewhynow said:

No treatment is working.

The problem is I have a lot of malabsorption. I think that’s why nothing is working.

I have tried midodrine, mestinon, fludrocortisone, desmopressin, nortriptyline, Ritalin, droxidopa.

The only thing that I’ve ever gotten with those meds are the side effects such as chronic diarrhea, too high blood pressure (droxidopa), insomnia and rapid heart beat (Ritalin). I have gotten zero benefits from any of these medications. 

 

If you're having side effects then you are absorbing the meds, at least part of the time. I have trouble absorbing meds due to gastroparesis. It seems to be intermittent however. Do you think it's like this for you? It's a real problem and one that doesn't have a lot of medical remedies for most drugs. I mostly have trouble with my oral steroid I have to take for Addison's. I have to inject it when this happens. But at least I can do that with the steroid.

There are patches for some drugs if you think it might work. 

I have it too and have for decades. I don't even pay attention to it anymore but I did notice some yesterday. FWIW I got IVIg on Saturday. It may be reduced though like p8d  describes.

FWIW, a couple of years ago my PCP's nurse practitioner was manually taking my pulse. He said any slight movement caused a big increase and that it was not normal. I'm relating this because he was checking manually by feeling my pulse at my wrist -- not some monitor that always seems to be called into question, and also because he said it was not normal.

I tend to think of my ANS as not providing the buffer it should and in addition, that buffering overall seems quite variable. I know at least part of the time that lack of buffering occurs *with* other bad symptoms, if not outright contributing to them. The worst I've experienced with this was last January, when my HR, BP,  gastric emptying and internal temperature regulation went from one end of the spectrum to the other in a very short span of time for a couple of weeks. I lost ten lbs in ten days. The way my poor body was slung from one extreme to the other was truly scary.  

For all having these symptoms, look up CRPS/RSD. I hope you don't have it.

I have the same problem as others have stated -- my normal HR at night is in the 50s with dips into the 40s and rarely into the 30s. I find when my Fitbit derived resting HR average is lower, I generally feel worse. IDK if that's because there's more of a jump up to 120 or so multiple times a day upon standing or whether the low resting HR itself causes me to feel bad. And by bad I mostly mean more dizzy.

I've formally been diagnosed with gastroparesis. I agree with others that diet is the best way to manage it and it's largely trial and error. I spent nearly three years on liquids. Now I can sometimes eat solid food but have to wait before I try to again. It's still trial and error but I'm pretty happy like this now that I understand my limits. One way to help is to not eat until you feel better. You can actually go quite a while without food or just switch to liquids.  

For pulse you can always check manually at your wrist or neck. I mean, even if you don't count with a stopwatch you should be able to tell the difference between 60 and 110. That's how I check my devices if I have doubt. 

On 10/28/2019 at 9:44 PM, WarpedTrekker said:

Also every night when I go to sleep, I turn on my CPAP machine and lay down. I used two different oximeters, and they always record my SpO2 going down to around 89% and then back up to 94-95% after a minute. Because of my two past DVT/PE's, my normal SpO2 is around only 94-95% max.

Has anyone with dysautonomia had symptoms like this?

Yes. I don't have a CPAP machine but I do have sleep apnea so I wear a SpO2 monitor with an alarm when my O2 drops below 90%. I normally get up several times a night to let dogs out and go to the bathroom. Maybe half the time my O2 drops below 90 and the alarm goes off when I lie back down. It goes down in the mid 80s. I have to breath really deeply and it will eventually go back up in the 90s. I always assumed this is due to the rapid decrease in HR when I lie back down but maybe not if it happens to you and your HR doesn't go up 30 or more beats upon standing. It will also randomly drop down in the 80s during the day when I'm just sitting around. I have a couple of SpO2 monitors so the reading is probably close to accurate.

In general, dysautonomia tends to cause you to have some weird symptoms that nobody can explain and that can be quite disturbing. I know this is crazy but as time goes by with these strange and frightening symptoms and I'm still here, I often comfort myself with, well, I didn't die last night...I'm not sure that's helpful but it's all I have at this point.   

On 9/25/2019 at 10:51 PM, MTRJ75 said:

Doesn't biofeedback usually involve some kind of machine? An alternative health care center I went to wanted to charge me $1200 per month for use of their apparatus, while also saying they had to brain map me first. 

That sounds like QEEG based neurofeedback. I actually had over 40 sessions of it while I was doing hyperbaric oxygen therapy.  It's not like biofeedback. It helps change the brain wave pattern to something more balanced. There's actually a lot of supportive science behind it. I have to say it was really wonderful. I would definitely recommend it from a qualified place. It was just too expensive to continue for long and I had to drive to get there, which I can't always do. But I saw definite improvements in the areas we worked on.   

On 9/21/2019 at 10:02 AM, Derek1987 said:

Is this similar to benadryl? Seems like i cant tolerate benadryl anymore. My body goes haywire when i take benadryl now. Wake up to hot flashes, and adrenaline i guess. Benadryl helps me sleep well if i dont take it every day. Wish i could take it sometimes. Benadryl is actually more potent than my xanax unless i take benadryl everyday like i used to. 

It's an antihistamine and like Benadryl, Mirtazapine makes me jerk and sometimes have full body convulsions. I love the other effects but the jerking is too awful.

Thanks for this!

Here is the scientific reference for the article in case anybody is interested:

https://www.ncbi.nlm.nih.gov/pubmed/31523009

I'd be curious to see if any POTS people have increased levels of this hormone.

I was on plaquenil and imuran until about four or five years ago.  Now that you mention it, the dizziness became much worse after I quit.

Oddly, I've had several therapies that made the dizziness better but didn't really affect my HR increase upon standing.

The ragweed here has been extremely high (that's the weather report not my description). Ragweed has always bothered me but I'm seeing more definite correlation with some symptoms, including, oddly, GI symptoms and I cannot sleep at all. Anybody here have GI symptoms associated?  

I did get a similar one of these covered by insurance because one of my legs, actually my entire lower right quadrant, is way bigger than the other side and after more than six years, nobody knows why. It does get plenty of medical attention though. So I kind of had it foisted on me but ok. Anyways, I rarely use it because it doesn't do anything to decrease the edema, at least not for long. However, the point they made in giving it to me and it's a good one is with all blood pooling or edema for whatever cause, the lymph system becomes involved and even though it seems I don't have lymphedema, these pump systems help keep the lymph system from becoming too disrupted.

I don't even know if what I wrote makes sense 😕  But it helps your lymph system even if it doesn't permanently help the blood pooling or permanently raise your BP.    

But you were out in the world!

I struggle with wanting to keep everything so I don't crash and wanting to be a real person every once in a while. I continue to think it's worth it to do things occasionally (read very rarely) that are worth it to me. 

7 hours ago, jklass44 said:

I’m just curious but why do you take clonidine if you have such severe episodes of hypotension? 

I also have episodes of hypertension. I don't take it unless my diastolic is 110 or so or my systolic over 175. There's rebound hypertension from clonidine so I don't take it unless I really feel it's necessary.