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My neurogenic bladder has been acting up recently and I read on an interstitial cystitis website that drinking a glass of water with 1 teaspoon of sodium bicarbonate, baking soda, helps plus it has a high sodium content. No potassium but I eat a banana or two every day. Salt replacement also has a significant amount of potassium.

Hi April. I'm sorry you are here but it's a good place to get support and information. Yes, gastroparesis and dizziness are commonly found in those of us with dysautonomia. Not all of us but many. There is no reason to be terrified, this is not a fatal condition just unfortunately, chronic. I suggest you check out the main page of this site and the 101 on this forum for more info on the many symptoms tied to autonomic dysfunction. There's a couple of books, the only one I can remember right now (brain fog is common too) is The Dysautonomia Project, that are extremely helpful. I tried 4 or 5 different beta blockers before I found one I could tolerate. It's a **** of a diagnosis but this forum is very supportive and helpful. You are not alone!

Aside from *never* feeling well enough to run a marathon, yes. I can go from ok to dreadful in 60 seconds. Does that make me like a sports car? LOL

Does she have a comorbid autoimmune disease? When I get stressed from physical or mental issues I get low grade fevers from undifferentiated convective tissue disease as a flare.

I won't comment on the relationship issues because I have never been there. I will say one book, How to be Sick (I think) by Toni Bernhard really helped me accept my new circumstances. It's from a Buddhist perspective but is in no way in your face. She also has dysautonomia and other books. Another very helpful book for both you and your significant other so you can understand what you are going through is The Dysautonomia Project (I think I have the titles correct, brain fog today).

You are correct about the epinephrine, my neuro told me absolutely to never have that. I have used topical lidocaine with no problems but don't know about injectable. Sorry.

I've taken both clonidine and methyldopa. I found clonidine lowered my bp much more than methyldopa even at extremely low doses (1/4 tablet). It was harder to control dosage with such tiny amounts. Methyldopa feels smoother somehow and I can tolerate entire tablets. I take my first dose after I drink enough fluid and have enough salt to raise my bp enough that it doesn't tank it. About 2 years after I was diagnosed with hyper POTS my bp switched from usually too low to too high. Now it usually starts low and keeps going up throughout the day. I've had to decrease the fludricortisone which has helped. If you do add any meds it's always wise to track bp/hr for a few weeks. Feel better!

Many of us do better with thigh high or full compression type panty hose (can't remember what the word is) than just socks. The heat is a problem. If you wear them it's uncomfortable, if you don't you have increased symptoms or faint. It is worth considering postponing for a semester until she is stabilized. Pulling a GPA back up is difficult and she will likely have increased symptoms with the stress of the change so starting stable will help a lot. Just my $.02.

Each university should have an accessibility office. You could contact them now to find out what sort of documentation she will need and what services they offer. She should also see each professor and teaching assistant as soon as possible and explain her diagnosis, issues and measures she may need to take such as sitting or laying down suddenly. I was a professor before I got sick and was happy to assist however needed. Of course that doesn't mean all professors so accommodating. That's why the accessibility office is vital, they document everything and are aware of all services available on campus. I used to have a shocking number of grandparents die right at finals time, every semester LOL. It gets some people cynical, especially with a disease no one knows about she may have some simply not believe her. She should request a prescription for compression stockings from either her PCP or the cardiologist. The PCP would help her get fitted and receive them before she goes. Be sure to get the device that helps put them on. Juzo offers tie dye and colored ones that are much better looking than the beige ones. They help a lot with walking and standing. Of course lots of BIG water bottles and salt.

These comments are interesting. I was two years menopausal when full blown hyper POTS hit. My late 40s were horrible. Migraines that lasted for days, couldn't tolerate any estrogen. Now five years post menopausal and 3 years into POTS I started HRT a few months ago for gun reasons and it has helped me and the POTS. Not a whole lot but everything is much more stable much to my surprise. I guess how you react before and during menopause has no influence in how you react well into it.

Farmgirl, my understanding, which may not be correct, is that when we are in sympathetic overdrive emotional reactions can happen more easily. I'm guessing it has something to neurotransmitters and/or hormones which are all out of whack for us. I know many of us have emotional triggers. Perhaps someone who understands it better and isn't as brain fogged as I am today can help. You could also search the forum for "emotional triggers" or something. My advice is don't be scared. Find out what is going on, get a good diagnosis and a Dr who understands your condition. There are lots of ways treat this. Yes, some of us are seriously impaired but many people do well with treatment. We are here to help.

I definitely had this before my hyper POTS diagnosis with the catecholamines test. Being on clonidine first, then methyldopa has mostly eliminated it but I still have a short fuse. Emotional stuff is extremely difficult for me and one of my worst triggers.

Hi. I'm trying to balance my need for exercise with POTS with my need to not overdo exercise due to autoimmune disease. I know we are all different and I typically need two days off after aerobic exercise (I do strength training and tai chi under PT guidance) but just wonder how anyone else manages this paradox? Thanks.

TCP, oh my, I am sorry to hear this. I sincerely hope all goes well for you.

I use Trioral rehydration salts, less expensive here in the states maybe there too? I had plans to move to NZ (job offer) before I was felled by POTS. Gorgeous country and good friends there.

Treatment for the AI, Plaquenil, has helped. Not the POTS but the fatigue somewhat, achy joints, fevers, malaise. It's one of the best things I've done for myself. Unfortunately, it makes it hard to balance exer/rest needs.

I tested negative on ANA tests for 30 years, including 3 tests in 18 months after developing full blown dysautonomia and POTS before one finally came up positive. After that a new rheumatologist diagnosed undifferentiated convective tissue disease. No other Dr considered my increasingly achy joints (I couldn't find comfortable shoes, my hand writing got very bad, hips always ached every morning) indicative until the ANA came up positive. I had many symptoms of AI disease all those years and my mom has three. I requested that final, positive ANA. I now have a great nurse practitioner who will order tests. Please keep getting tested and find a Dr who will diagnose on symptoms, not just labs.

I'm no Dr but some of that sounds like Sjorgen's or other autoimmune issues. Do you see a rheumatologist? Just throwing that out there.

Hi Dizzygirls. I saw the neurologist yesterday (am paying for it today) and she said, yes, it's partly sympathetic overdrive and that an alpha blocker can help somewhat. It sounded like nobody knows for certain what might help but she suggested OT. I'm already on methyldopa. That's if either of us can find one who deals with autism and is my network. I'm waiting to hear back from her. I did some vestibular PT last year that helped somewhat but didn't allow me to leave the house much. I'm quite bemused by the discussion of this and intelligence. I used to be reasonably intelligent (PhD but that's mostly about perseverance) but now can't remember/understand anything much more difficult than fluff and that's on a good day! Another thing taken away, c'est la vie. It's a very interesting thread.

I don't have any answers but suffer badly from it myself. It's partly why I am housebound. Clonidine helps a bit but not much. I see my neurologist Thursday and asking about is one of my top questions. I'll let you know what she tells me. I have read that occupational therapy akin to what is done for people on the autistic spectrum can help. I intend to request on OT consult.

Buff, it happens with warm fluids too. . I just don't know how to treat it at all. Thanks.

Hi everyone. I've been less active but lurking for several months. I have hyper POTS, high norepinephrine on standing tested two years ago. I used clonidine until a month ago when new cardiologist switched me to Bystolic. I have far fewer bp drops and less fatigue on Bystolic but bp is staying elevated to 150s/upper 80s by mid-day and continuing through the day. When I drink 8-16 oz of fluids my bp jumps 20 or so points systolic in minutes. That leaves me 170s/88-91 for awhile. I'm told to try adjusting doses and document vitals. I tried 1.5 tablets of Bystolic with not much change in bp. I cut back fludricortisone to 1/4 tablet daily from 1/2. I don't like my bp going this high. I called the Dr Wednesday and am waiting for a call back. Any ideas what is causing this and what I can do/ask the Dr for? Is this response to fluids normal? Help!! Thanks in advance.

Hi, I'm trying to figure out what's going on with me and welcome ideas to take to my neurologist. My usual daily pattern seems to be low bp/tachy first thing in the morning but I control both easily with fluids/salt and everything is ok until late morning when bp goes high-ish but to where I generally feel good (130s/80s) sometimes higher (150s/90s) but hr keeps going up to tachy (120s) to where I feel very symptomatic, especially if I am upright for anything more than a couple of minutes. Then in the late afternoon or evening bp goes down somewhat and hr goes back to 80-90s. I can then control both with salt/fluids again. My catecholamines showed hyperadregenic about 18 months ago and I have been taking clonidine 0.1mg at hs and a quarter of that about noon and thought that's what was setting me off but I've tried stopping the noon dose and the bp/hr still do it. I have also tried taking it 3x/day to no effect. I take fludricortisone in the am and can't tolerate beta blockers. I'm waiting to get corlanor from Canada. Any thoughts about what is going on are welcome! Thanks.

I'm wondering what brand of rowing machines people like. I know Concept II is recommended in the Levine protocol but need one for home use and $1,000 is a lot. I'll fork it out if it's worth it but wonder if people are happy with other brands. Thanks.

a well respected ANS specialist suggested clonidine, remeron and riboflavin. I started sleeping 6_8 hours for the first time in 18 months.