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Feb 8, 2017 · nutcracker syndrome in Digestive Health

No new treatment with regard to Nutcracker for me.
Being on disability for > 5 years, I’ve taken time to find as many helpful therapies as possible. I’m doing somewhat better than when I posted originally, but there has been no magic bullet. In general, here are some (there are MANY more, but I’ve never figured out how to put them all in one place) thoughts on surviving:

ROUTINE:
If out and about 1 day, next day or 2 are for resting, gentle stretching, sunlight (if available) — NOT for paying bills, etc.

NEVER: Lay on my left side.

NEVER: Lean in a chair in a way that stretches my left side.

If sitting, and I get the sharp, burning pain in LLQ – GET UP! !! Lie down, elevate hips, Heating pads. Sitting through the pain for even a few minutes, I believe, cuts off blood supply to LLQ organs, and pain (which then lasts for DAYS) is due to ischaemia (tissue damage from lack of blood (oxygen) supply).

THERAPY, etc:
Pelvic Floor therapy – I need multiple sessions every few months to keep muscle spams calm.
– I’ve found using a different therapist every so often allows me the benefit of varied treatment ideas. The last one had me work methodically at belly muscle control, and now (6 months later), I’m able to LIFT organs in my belly up (WHILE BREATHING COMFORTABLY) so they leave my colon and bladder uncompressed, which has a significant impact on pain.

Trigger point injections vaginally every few months (I have scar tissue that complicates this whole mess).

I finally found a seat cushion that works for me in the car.

Car seat heater – bought one cheap to put on my normally cold seat.

Cupping of tight muscles. I found very affordable cupping kits online.

Hot Epson salts baths.

Infrared light is very effective for relieving tight muscles.

Lymph massage with essential oil infused lotion and/or cupping of sore lymph areas.

DIET / SUPPLEMENTS:
When I am consistent, these good habits help:
Lesten food cravings
Keep digestive system functioning, reducing constipation issues.
Keep energy level up.

I have excess urine crystals, which cause irritation to ureters and severe spasms in the area. Many foods and supplements make it worse.

NO (not even a little):
Dairy.
Eggs.
Oats.
Rice,
Foods high in both calcium and phosphorus seem to cause urine crystal problems for me.
Asparagus.
Spinach.
Peanuts.
Plums.
Walnuts.
Cashews.

Only 1 new food, med, etc at a time for at least 2 weeks — pay close attention. Often I can’t figure out if ok or not, so after multiple trials, I trust my gut feeling: “It seems that asparagus causes problems, but I don’t know for certain.” I’ve learned to follow my instincts. They’re always spot on.

BONE BROTH.
I keep a “perpetual” small crock pot of broth and add water and roasted bones as it depletes (along with a little apple cider vinegar, onions and garlic – and sea salt). I add strained broth to cooking every day.

Vitamin B1.
Vitamin B2.
B6, B12 (METHYLcobalime), Folic Acid combo.
Digestive Enzymes
IB Gard.
VSL #3 Probiotic
Zinc
Cosamin ASU

ESSENTIAL OILS:
Oregano (mix w coconut oil for thrush).
Eucalyptus
Lemon
Sometimes I keep a pot on the stove, just steaming and drop some oil in the pot and breath it in.

Coconut Oil

Thai curry paste (in cooking).

All fruits and vegetables I can tolerate must be cooked (except citrus, but I wash citrus peels with soap first).

Low fiber.

Lemon juice first thing in the morning (allows stomach to work like it’s supposed to – triggers release of bicarbonate from the stomach lining in response to the acid infusion, which then alkalyzes the system).

Fresh squeezed grapefruit juice.

EVERYDAY SMOOTHIE (many of the ingredients increase mitochondrial function) containing:
Cooked, tolerated fruits (pears, apples, cherries, blueberries, cranberries), cocoa, brazil nuts (selenium), cinnamom, coconut cream/coconut milk.
Magnesium Citrate powder (Natural Calm prepared with hot water).
Powder Combo: L-Glutamine, Acerola cherry vitamin c powder, cranberry extract powder (from capsules), D-mannose (cranberry/mannose combo clears u.t. junk).
L-Carnitine liquid.
Lugols iodine.
Colloidal silver.
Ground flaxseed (tiny amount – this is my current new food that I’m testing at this moment.
Lemon juice.

MEDS:
Too many to mention, but I’ll hit on the ones I think are most helpful for direct nutcracker problems:

DITROPAN XL (only the brand name works). Anticholinergic that relaxes urinary tract spasms.
THYROID MED – without it, allover spasm issues are unbearable.
XYZAL – antihistamine – without it my body is way too reactive to everyday allergens that affect me, be it sinus swelling, body aches, bone pain or muscle pain.

DAUNTING?
You bet.

OVERNIGHT CURE?
No Way.

FULL TIME JOB:
Seems like it.

WORTH IT?
Seems to be the best route I know of at the moment.

I am, by no means, cured. I do, however have more good days than I used to (not yet more good than bad, but it’s progress.

Every sinus infection, virus, injury sets me way back, but even though it’s a slow process, I now can climb “out of the hole” with a process I don’t have to guess at as much as I used to.

Everyone is different. What works for me may not for you. But, if anybody finds this is useful, maybe it will jump start your path.

Oct 10, 2016 · Ear tubes in Ear, Nose & Throat (ENT)

FYI – the ear tube I had placed (and soon after removed) did not help my ear problem, nor did it actually cause infection.

Whatever chronic low-grade (undetectable) infection that has been present for decades, combined with placement of the tube aggravated things to the point of localized ear drum bleeding/scabbing.

For whatever it’s worth (probably not worth much), multiple ENT’s I hired and paid looking for a solution — as well as the ENT who removed the tube — had no answers for me. In the end, I was required to figure out and direct the course of action (surgical removal) without physician guidance. The only feedback I received from the ENT’S , regarding my bleeding eardrum, gave me no reasons — instead I witnessed confused acknowledgment that they were observing something they did not understand, and had frankly never seen or expected to see.

Oct 10, 2016 · extreme outer ear pain in Ear, Nose & Throat (ENT)

Based on my experience, you may never get answer [or maybe you will???}

I believe I have a chronic, low grade infection – perhaps fungal or bacterial.
I have had great relief for a little while now {it feels wonderful to be able to sleep on my left side for the 1st time in so long}.
I’ve been recently using infrared heat to warm up multiple painful body locations, which happen to include ears, neck and sinuses, as well as LOTS of other areas on my EDS/body of chronic pain. At this time it is helpful.
I believe the heat kills whatever low-grade infection may be lingering in the area.

I will NOT give any advice about the heat therapy. I would leave the decisions related to the infrared heat use completely up to you and whatever you decide/discover/research on the topic.

Take note though, that many saunas use infrared as the heat source.

Good luck. Let me know if you ever do have any improvement if you know the reason for the improvement.

Apr 29, 2013 · Awkward/rapid/skipping heartbeat in About Kids & Teens

First – I believe the term ‘panic attack’ will be used very little once more drs. become humble enough to admit they do not know all. In my opinion, the more you question yourself regarding what is going on with your body, the more likely you will be to end up with real panic issues.

Trust your gut. In my family, we’ve had many reasons for strange heartbeats:

Myself – and 2 sisters – have had instances (many months long) of ‘skipping’ heartbeats. One sister – worst in her 20’s. For me, worst in late 20’s, early 30’s. Tests always show nothing serious — called ‘PVC’s (pre-ventricular contractions, I believe). Some mild mitral valve prolapse and other minor ‘valve regurgitation.’

One daughter gets racing heart due to ‘POTS’ (postural orthostatic tachycardia syndrome) due to an autonomic disorder (dysautonomia). Runs in my family – nervous system doesn’t regulate certain automatic systems very well…….., but we had her checked out thoroughly also because…………

BUT – the most important situation was with my oldest daughter, when she was 17 years old. Many drs. dismissed her. She was having rapid heart rate. She’d feel extremely weak, tired, dizzy. I knew something was not right — her rate would jump to 140 or 170 for no reason, but at the dr. office, it was ‘under 100,’ so “ok.” EKG’s also looked normal.

Found a WONDERFUL cardiologist on my own. He also had some trouble ‘finding’ the problem, but he did; and when he did an echocardiogram, found out that her heart was only about 50% effective. In addition to that, a 24-hour heart-monitoring service was used to see what was happening over 1-2 weeks.

In the past 3 years, she’s had an ‘ablation’ procedure to correct ‘av nodal re-entrant tachycardia,’ been on some heart meds, and monitored to keep heart rate regular. Last year, we learned of a miracle we had not anticipated — her heart is functioning 100%.

Could have been due to a virus, strep, mononucleosis, medication…………..or just an electrical problem……….we’ll never know, but it taught me once and for all to trust my gut!

For me (and my sister), our ‘harmless’ PVC’s were always exacerbated by:
sudafed
red wine
MSG (doritos and other junk foods).

For the past year, my sister and I have been taking the powdered magnesium supplement, Natural Calm (magnesium citrate). Since then our blood potassium levels have become more stable, and we have had 0 problems with the irregular heartbeats.

Apr 19, 2013 · Fibromyalgia Medications and side effects in Just Want to Talk

Lyrica worked wonders for me – at bedtime. Gained tons of weight right away, but didn’t care because of how good it felt.

BUT — legs swelled, liver enzymes increased. Enough to convince me to stop.

I haven’t found anything I can tolerate for pain w/o groggy/draggy side-effects, including some topical (compounded Rx) analgesics.

Nurse Pract. recently recommended BENADRYL + MELATONIN ‘cocktail’ at bedtime. Worked great for sleep, BUT, also caused the groggy / draggy ‘hangover.’

I use CELEBREX when pain is acute — and it’s great — usually only about 1 pill, 2-3 times/week.

Recently, tried wrapping ELECTRIC BLANKET around my legs a.m. and p.m. 1-2 hours at a time — decreases tightness/pain in my legs alot — also helps w/ muscle spasms all over — also helps digestion work better — FEELS WONDERFUL!!!

Sick for years — I purposely have avoided visiting a rheumatologist as the meds they prescribe I consider nasty and dangerous.

DITROPAN XL for colon, bladder, ureter spasms.

Anti-depressant for survival.

NUVIGIL- because of ‘probable’ narcolepsy.

Apr 19, 2013 · Gastrointestinal Problems (Acute Gastritis) in Digestive Health

Sucralfate (Rx), also know as Carafate – was helpful for me – especially if I let the pill dissolve in my mouth, then swallow.

Prilosec, we believe, brought on/aggravated the gastritis.

Nexium worked well.

BUT —

after taking for a few years, broke a rib, and was alerted to bone loss starting.

Couldn’t stop taking nexium w/o gastritis

UNTIL —

Listened to my sister, who told me to drink alot of citrus (especially lemon). I had a hard time believing it, but since she was not the first I’d heard this from, I tried.

Due to IBS-C, I juice red grapefruit and then strain (to minimize fiber).

I also add juiced (strained) lemon, along w/ magnesium citrate powder (Natural Calm).

After forgetting to take the nexium for a while, I realized, as long as I was drinking the citrus, I no longer had gastritis.

Apr 19, 2013 · MCTD in Digestive Health

Sounds alot like what I struggle with. Prior to quitting work (6 yrs ago after YEARS of horrendous pain), I was an engineer, so it’s my nature to keep looking for solutions. Some of them that I use daily are:

DIET:
NO DAIRY – causes severe joint/tendon pain
NO RAW FRUITS/VEGGIES (except maybe avacado) – gi problems
NO EGGS – cause severe colon gas/acid/spasm – suffer for days w/ little egg!
NO (VERY LOW) FIBER – Gas causes colon to spasm shut.
GLUTEN FREE – gives gi system a break when completely off for months at a time.
Along w/ gluten free, limit sweeteners to honey (cooked best for me), stevia, saccharine.
Look into book: “Breaking the Vicious Cycle” (SCD diet)
SLUSHIES – a.m. & p.m. – fresh grapefruit juice (or cranberry juice cocktail) – w/ ice, coconut (natural, unsweetened), acerola vitamin c powder, l-glutamine powder, cocoa, stevia , natural calm (already liquified), (sometimes pecans, almonds…). I LOVE this concoction. (I got some “smoothie maker bottles” to go on my standard osterizer).
COCONUT OIL and BUTTER seem to help stimulate digestion.
BAKED APPLES – w/ honey, cinnamon and a little water — eat w/ pecans heated in a little butter.

SUPPLEMENTS:
NATURAL CALM (magnesium citrate powder) – best thing for motility I’ve used.
2-3 tablespoons a day (mostly at dinner)
SENNA – approx 35 mg every other day w/ dinner (yes – that’s alot).
NO CALCIUM (for me – kidney stone/crystal issues)

MEDS:
DITROPAN XL (not generic) – reduces colon/bladder/ureter spasms, helping gas & stool to pass.
Other meds also – but not sure if they apply directly to the connective tissue problems.

LIFESTYLE:
YOGA – improved nutritional absorption – gained weight
ELECTRIC BLANKET – a.m. and p.m. – wrap around legs for 1-2 hours (WONDERFUL)
PHYSICAL THERAPY – finally found one who really gets the mechanics of things — I use him as necessary.
CHIROPRACTOR – found a wonderful guy associated with a comprehensive “Spine Care” program. He’s the only one I’ve ever used who did anything worthwhile — I use him as necessary, but if I keep doing the right exercises, don’t need him.

I’ve found various exercises that help – between reading books and p.t. help.
Inversion Table: I use it to allow gravity to move my intestines upward — relieving the pressure down low seems to help w/ constipation.

DOCTORS:
GI – 8th gi doc I tried is great. She has independent practice and understands functionality better than most — but, hard to find someone like this. Hard for these docs to stay independent of the big companies — she’s closing shop this summer.
HAND SURGEON – Also found a great one – after problems w/ first hand surgery. He’s fixed me up, and just finished my latest hand surgery. He, also, is leaving the big hospital company, and I will no longer be able to use him — hard to find the ones who still want to – and are allowed to – do things how they know are best.
PHYSIATRIST / PAIN DR.. – Found a good one through a disability attorney. Extremely valuable in referring me to helpful specialists.
PSYCHIATRIST – ask around for someone others really like. I take depression meds — spent too many days working too hard just to attempt to ‘climb out of the hole’ over and over.
PSYCHOTHERAPIST- finally found a good one. Was most helpful in helping ME to understand that I was not just lazy and whiney!

Do not misunderstand — pain / constipation / pain / infections / ……….. are still a daily struggle, but without constantly working on above issues, I would be on the floor all day w/ pain at 9-10.

Support groups could be great – but only if folks are discussing solutions rather than problems. There are lots of great ideas, and we only figure out if they work for us through trial and error — and, yes, it’s a full-time job.

Apr 19, 2013 · extreme outer ear pain in Ear, Nose & Throat (ENT)

I’ve had same symptoms for 20 years.

When I sleep on my side, I bunch edge of memory foam (lightweight) pillow under my neck so force of ear on pillow is minimal.

Also – when really acting up – small amount of terazol cream (yes, it’s a ‘vaginal’ yeast cream — and I’ve also used it for yeast in my dog’s ear) on a q-tip swabbed around the ear canal.

In 2007, I had ear tubes placed (not related to this). My left ear, which is the one with the soreness problem, became VERY painful and would bleed when I slept on my left side. After deciding drum was infected at the tube, it was removed. Surgeon was surprised at how infected it was — even needed to patch the drum. I think that’s when I decided to try to treat for yeast.