Treatment/comfort Measures And Techniques

[trice125]

I am interested in what others on this board use for treatment/comfort measures and techniques. My symptoms have been quite severe here lately and my normal tricks/techniques aren't helping at all. I'm just looking for some new ideas so I can get out of the Groundhog's Day movie if you know what I mean.

[Guest Hanice]

I don't watch much tv because it only makes me anxious and over-stimulated.

I drink a lot of juice Gatorade and water.

I recently stopped eating gluten.

I take valerian capsules, and Freaked told me that passion flower in conjunction is great.

I sleep as much as I can.

I try to not move from my couch until the evening (I knowIt sounds aweful) other than that I have nothing

[Relax86]

Trice ~ I'm wondering what your symptoms are....seems like - and I could be wrong - but people who had similar POTS symptoms as me seemed to improve and be triggered by my same 'stuff'.

I'm a low BP pots. I'm in a little remission right now and that's nice. But I previously was bed bound and had pretty severe days. I also never had pain, and never had terrible HA's as a symptom. I was a light headed, fainter, with an elevated HR, ear pain, head pressure (like airplane cabin pressure), digestive problems (tachy, pain - never bowel), and felt like I never had enough air. I often thought I would die in my sleep.

Careful choice of exercise helped me, Midrodine, Hdrocortisone (life saver), salt and water, decreasing sulfates/nitrates in my diet all helped me as well as small meals. The more sedentary I was the worst I felt - now this rule isn't for initially - because initially I was bed bound. But there came a time where I had to move and the more I tried the better I felt. It came with a ton of uncertainty and days of back sliding too. Lots of reading on the message board helped.

Specifically finding people who seemed to have my symptoms. You can probably just look up my profile and see my history. To be honest I don't remember everything in the last 18 months but it took a good year to pull out of it. I'm at about 90-95% improvement. But I think about relapse daily. The mental game does provoke symptoms for me. I'm not saying that this is all in my head, b/c that's totally untrue but that stress is a true trigger for me.

Good luck with finding some strategies. Celebrate small successes....stay positive. Good luck. Tracy

[Guest Hanice]

Careful choice of exercise helped me, Midrodine, Hdrocortisone (life saver), salt and water, decreasing sulfates/nitrates in my diet all helped me

Im really allergic to sulfites in wines.... How do you avoid sulfites other than the ones in alcohol? Arent they in everything? And couldnt your head pressure come from chronic sinusitus like me? I got an mri done before I knew I had pots and it showed sinusitis.. I still have it a year later.... it seems too many of us potsies have sinusitis issues for it to be a mear coincidence.. I wonder why we get this.

[Katybug]

I have changed lots of things in my life. I keep a reusable grocery bag at the top and bottom of each stair case in my house so I can put things in there and take them with me in one trip without forgetting anything and having to make extra, miserable trips up and down the steps. I use only vinegar water or hydrogen peroxide to clean my house to avoid chemicals that seem to set me off and a steam mop too. I always have ice packs available in the freezer for migraines and when my body temp just won't cool down. I sit to was dishes and to prep food for cooking. And I make large batches of things I can freeze when I am well enough to cook so I don't resort to processed foods. I plan my errands carefully to minimize travel and stress. I got a handicapped parking placard from the MVA so I can park closer so my walking is in the store not the parking lot. I sleep when my body tells me it needs it which is often. I'm sure there are other things but I can't remember right now.

[Guest Alex]

Trice,

Sorry to hear you hit a rough patch

I just posted a link to someone's list of things that have helped with POTS. A lot of good info there. Here's the link again:

http://www.hospitalsoup.com/hc/postural-orthostatic-tachycardia-syndrome-things-that-helped-me-with-pots-recovery/

Also, if you haven't so far, make sure you check dinet's lists of "do's and don'ts":

http://www.dinet.org/what_helps.htm

http://www.dinet.org/what_to_avoid.htm

Stay strong,

Alex

[Relax86]

Hi Hanice...wine is a huge trigger for me. Diet wise I do the same things every single day.... egg whites, beets, bananas, smoothies, kefir; brown rice (Trader Joes), spinach, chicken, spiniach (or sliced london broil), chicken again, salad, broccoli, tomatoes, more brown rice and beans. My husband is puerto rican so we do a ton of rice and beans, we just cut out the seasonings. If I narrow my diet down to the above - which I'm fine with - then on weekends if I have a little chicken wing, or 1-2 beers, etc...I'm ok. If I eat processed food, salad dressings, anything pickled, then I flare. Can't do red wine at all, soy sauce - or anything that makes your taste buds think sour or tang.

As far as sinusitis, that's not my issue. MRI was clear and I don't really have those symptoms. I think my head pressure comes from cerebral hyper perfusion. That symptom has gone away since stabilizing my iron, ferritin, D, and exercise.

Good luck

[Guest Hanice]

If I SIP any alcohol that has even a little bit of sulfites I get red, inflamed and itchy all over my face and body!

[trice125]

The worse of my symptoms includes fatigue, dizziness, general weakness and muscle tension, chronic headaches, exercise intolerance and fatigue, brain fog, chest and head tightness/pressure, physical anxiety, insomnia along with not being able to get into a deep sleep (plus lack of deep sleep, heat and stress are my two biggest triggers), lack of temperature regulation (if I get the least bit hot it can also be another trigger and only adds to my exercise intolerance), extreme nausea/abdominal pain/sometimes vomiting and lack of appetite that comes from gastroparesis, IBS, acid reflux, overactive bladder, tachycardia, etc. I feel like I could go on and on.

I was diagnosed with hypovolemia POTs at the Cleveland Clinic in April. They suggested salt loading which I have been doing since first going to the Clinic in December but it doesn't seem to make a difference besides making me gain a lot of weight (30 pounds since December). Plus gatorade, NUNN tablets, and salt tablets all made me vomit or get very nauseous so I've had to switch to just adding as much salt to my food as possible. Dr. Jaeger didn't seem to listen to me that my posture doesn't matter and exercise is almost impossible to my temperature regulation issues plus since we went for my first appointment there the week before Christmas I couldn't get an appointment with the neurologist there that's in this specialty. Dr. Jaeger also seemed to be focused on doing Hemodynamics testing even though we tried to do it twice and they were unable to get a big enough IV started either time.

My local doctors don't believe that tells the whole story though plus for some reason all of the autonomic testing was done with me on medication so the results don't totally tell the story. I currently have a local electrophysiologist and while he tries to be helpful he's run out of ideas and I also have a great primary care doctor that tries to help she knows this is beyond her knowledge. I'm seeing a local neurologist that specializes in this area here in a couple weeks so I'm hoping they are more helpful than Cleveland Clinic.

I don't drink at all, actually got worse when I went gluten free for 6 months, and either haven't had any reaction or a bad reaction to most medications that are used to treat POTs. I'm currently on medication to treat every organ system in my body because they are all affected. I also freeze meals like you do Katybug which do come in handy quite often but since my appetite can be very low sometimes especially when my symptoms flare up that I end up eating whatever I have an appetite for. ​I think I have covered it all and I hope it makes sense, the brain fog isn't making this easy this morning. I appreciate any and all suggestions.

[Guest Hanice]

Have you tried natural remedies like magnesium, vitamin d, and potassium and Valerian and passion flower? I am going to start this really soon (when I have the funds ;-P ) I know Valerian really helps me but I notice that when I use it too often the effect kind of weakens until I stop using it for a day or two.. then it works fine once I use it again. I take7 capsules now but in the beggining two or four were enough for me. I recently tried 10 and I freaked out because it made me feel numb wich made me a bit anxious from the numbness. I like the idea of mixing Valerian and Passion flower even though I havent tried it yet, but I really want to. I hope you get better answers than this. And I hope you feel better soon.

[trice125]

I take magnesium daily for my IBS and my vitamin d and potassium levels are at a correct level in my blood already. I have Valerian and passion flower on my list as possible things to try in the future.