What Has Helped The Most To Bring Improvement

[lgtaylor100]

I've noticed that many of you say you are doing better now than before. People have mentioned that they were housebound and can now get out and do activities and in some cases work. What has helped you the most with improvement. If it has been several things, please list them.

Thanks,

Lynne

[firewatcher]

1. Getting an "official" diagnosis that there IS actually something wrong and it is not "in my head."

2. Accepting my limitations and "allowing" myself to feel lousy when I do.

3. Volume expansion, for me dDAVP.

4. Heartrate control, for me Propranolol.

5. Classical Chinese Medicine.

I know I'll get a lot of flak/questions on this that I will not answer on the forum. I found a very good practitioner who is definitely not the mainstream, TCM type. I take herbal medicines that are custom formulated for me, and researched to not adversely react with my other meds (or kill me.) There are a small group of these practitioners in the US and elsewhere, most trained under the same few teachers. I have seen my biggest improvements since beginning this aspect of my treatment.

[Brye]

Exercising regularly has helped me a lot. Still can't go back to work but it's helped increase my standing length of time and endurance. Also I cannot miss a dose of my atenolol without feeling worse. Thank goomdness for my meds!!

Brye

[MomtoGiuliana]

#1--TIME!

Also exercise and increased fluids.

I still take a beta blocker on flare ups which helps with tachycardia.

[Csmith3]

1. Cardiac drugs to reduce my heart rate.

2. Progesterone-based contraceptives.

3. Having the confidence to say that I have run out of standing time if I start feeling ill and just sitting down wherever.

4. Putting my feet up after having a meal.

The best I have ever felt is when I have been able to increase my blood pressure with midodrine and florinef. Unfortunately, I could not tolerate them long term but I still have a significant improvement from the above.

[tinkerbella]

I really don't feel much better, but I'm learning to live with Dysautonomia the best I can from this bed of mine. If I'm taken out one day, I'm drop dead tired the next. I couldn't live without my infusions bi weekly. I'm running out of venous acess and scarring. Docs are afraid of infection so they have avoided the port route till the day they can't get in. Last week took four tries. Now when I go to the ER the new question is, "What is all this scare tissue all about"? My new reply is, "I'm infused twice a week in the infusion clinic and they then go look at the LMR". I'm a constant advocate for myself. So still having a little F I G H T inside of me ( but being N I C E on the outside is my main concern ) My wheelchair motorized, walker, having a commode in my bedroom, having a chair in the shower, learning to cut my own hair on youtube, having some in home appointments PT, Nurse, OT, and a few more. Letting go and letting G O D ~ Letting someone come in and clean. Having someone come and organize starting next week ,Keeping a cooler of drinks, food ice packs, in my bedroom. Having a loving D O G who is on top of my always. When I can't take it anymore DRAW or WRITE or CRY in the shower. Then I remember, I have 3 K I D S and TWO little G R A N D B A B I E S who love me like crazy and that is the best medicine in the whole, wide, world!!!

P.S. Did I mention my F R I E N D S? Some of them are A N G E L S ~ *

Bellamia ~

[janiedelite]

1. Getting a diagnosis and understanding how to care for my body.

2. As much upright activity as my body will allow.

3. Volume expansion (40-50mm thigh high compression hose, 10gms sodium/day with added extra electrolytes, 3-4L water/day).

4. Having confidence in my medical team.

5. Pain management (I have small fiber neuropathy). When my pain is bad, everything else is worse.

[Sallysblooms]

Having my Integrative MD's have been crutial. The correct blood testing to see what I need to add to keep my body supported. The right hormones and supplements to give my body all it needs to heal, especially the nerves since they control the muscle/blood vessels to help the blood get to the brain etc. Lipoic Acid Supreme, Liposomal Glutathione, ATP, Dribose, Carnetine, CoQ10, magnesium, lots of antioxidents, Supplements for the immune system on and on. I have CFS and I was doing very well until POTS hit ater a surgery two and a half years ago.

Slowly I am improving. I have a wonderful new recliner that is so comfy and goes way back. Having my legs up a lot is important. I have a supportive family and husband. He does the cooking etc. We have a couple that cleans the house. I make sure I get lots of rest.

I also have good "tools" to help like bp monitor, wheelchair for inside the house when I need it and outside, heart rate watch, shower chair, Med alert bracelet, a seat that folds to take when I need to. I make sure not to do too much, always having my w.chair or seat. That is important.

I also keep a calendar to keep track of new supplements and how I feel that day, I use stickers to make it fun.

Not going out in the heat except to and from the car when we go out to eat, errands etc.

I do exercises carefully. I have an elliptical machine, bands, hand weights and I just ordered a small pedaller, like a bike that you use from a chair for days I cannot use the elliptial. I do calf raises and calf flexing for circulation and muscle building.

Doing whatever you need to do to rest, heal and repair the nervous system is good. It takes time.

[toddm1960]

1) Getting my dysautonomia and mitochondrial diagnosis.

2) Learning my energy envolope.

3) Aceppting what I have, enjoying what I can do, and not what I might be missing.

[Yolaclover]

1. florinef

2. midodrine

3. Drs whoa re understanding and listen

4. Fighting for myself, even though I don't want to and wish someone else could do it for me

5. slowing down, listening to my body and of course, this group!

[mwise]

1. Having this forum of Family to help me not only physically but mentally cope with my disease.

2. Knowing I have Dysautonomia.

3. Finding what works best for me from my special doctors and dietician at Cleveland Clinic along with this forum to treat my symptoms. (See info listed)

4. God and Prayer.

5. Family and friends that accept my limitations and help me daily at home and work.

6. Taking each day as it comes.

7. Never giving up on finding a cure.

8. Loving my self.

[Guest tearose]

I don't assume anymore that doing better is permanent because I have had many big relapses when in denial that I needed to honor my limitations. We "look" so "normal" so it is very easy for others to push us or for us to push ourselves.

My greatest physical improvements came after Mayo Clinic diagnosed me and helped me find a non-drug based compression treatment plan to manage. It gave me an improved physical quality of life.

My greatest emotional and spiritual improvements came when I turned my heart and soul to the Divine. It has given me the greatest understanding of unconditional love, purpose, connection and meaning.

[lgtaylor100]

Tearose -

Could you explain the non-drug based compression treatment?

Lynne

[Guest tearose]

The Mayo doc's non-drug based treatment plan for my ANS dysfunction for my body:

!) Wear compression garment on pelvic/abdomen to prevent blood pooling. Wear compression stockings waist high to prevent blood pooling.

2) Know how much water and electrolytes I need in my body. I have learned the difference between the pain or discomfort that comes from a need for potassium, a need for water, a need for sodium. ( Lack of hydration bothers my MVP, lack of potassium brings on sharp pains and too much sodium brings on painful full feeling of congestion around my heart and body swelling)

3) Know when and if I should have a little caffeine.

4) Know what it is I am feeling and do counter-maunevers or take action when needed.

examples:

For SVT or beginning to see "snow" or when having way too fast a heartrate to speak:

This list is given in succession as symptoms progress if unable to get it under control: Cross legs if standing. Diplomatically rock from side to side. Then sit down. (Use of a seat cane or knowing where nearest chair is is helpful) Then draw legs up to chin in a squatting position. Or lastly, lay down on side with legs drawn up.

For Gastro issues: Let my body come up to function before I eat in the morning. Eat smaller portions of foods that agree with my body several times over the day. Know how much fiber and what form to take.

5) Rest/sleep enough adding naps as needed. Stay as active as possible without bringing on any exercise/activity intolerance. The wonderful thing I learned from experience that helped ignore the well meaning protocols of the Dr L's of the world; was that me/many of us; our muscle fibers do not build up strength like the "regular people" and build cumulative strength and endurance. Our fibers get to a point that they seem to just finally give out and weaken and we then experience fatigue.

6) You know your body best. Trust this wisdom and use it properly.

7) Get the best care for yourself you can. There is only one you! Turn inwards to meditation / prayer remembering you are blessed as you are and ask for the guidance and strength to do your best in every day. Then turn your eyes upwards and outwards and share what you receive with others.

8) The best answers to anything always includes love.

[yogini]

All of these have been important to my functioning/recovery

Medications - mainly betas and paxil. Trying new medications and weaning off meds when I didn't need them anymore

Exercise - recumbent bike, yoga, pilates

Fluids/organic broth

Compression stockings (thigh high)

Controlling acid reflux

Improving my sleep

Breathing exercises

Learning to manage stress and calm my body down

Pacing myself

Getting a flexible work schedule

Acceptance - rather than fighting/questioning - accepting that this is what I have and trying to work with my body

Time

[lgtaylor100]

Thank you everyone for your wonderful replies. One thing that kept coming up over and over again is acceptance of limitations and that is something that with which I have a very hard time. I am trying to engage in more activities but it is very hard and the next day I find that I am exhausted and need to lie on the sofa for most of the day. I am having a very hard time accepting myself as a sick person.

[Sallysblooms]

I accept I am ill, but at the same time, I have fought it by learning about it and having good doctors that help with supplements. You don't have to just accept and give up, you accept and do all you can to improve!

[yogini]

Sally, I agree with you - it's about thinking what you CAN within your comfort zone, to move forward. One thing I forgot to add to my list: a therapist!

[ladyt]

Hi

Lots of difrent things at difrent times.

But starting on allergypills a year ago made the biggest difrens for me.

But there are also lots of other things;

Like eating the rigth food often and in small portions (often the rigth food is a lilte sugar)

Acsepting the days i have to stay in bed or in the sofa all day doing nothing.

Rest alot

My wheelchairs

My showerchair

findg out that a low dose midorin was a lot better than a high (after over 8 years, almost 9)

Painmeds to gett better sleep

Giving up trying to exserise, and then lookng at all movment as that, exersise. Doing micro exersis when abel, and remeber to avoid it when only makes me worse.

Staying away from food making me sicker.

My elbed, having my head elevaited trhoug the nigth.

terapipool (sadly i only gett a few sessions a year, but they are worth gold)I dont swim or move around alot, but ust flaoting in the warm wather is wounderfull.

Putting my legs up when ever i can

Using a hartrate watch (give me better understanding and know how, like i dont feel when my hart goes faster)

Trying to acsept that i have bad periods, like the winthers (the cold is bad for me), and this year also spring and summer (cos its been cold)

And that my good days so fare is few and never last all day.

Knowing that if i never gett better i still can have a nice life, ust a lilte difrent.