I really could use some ideas and info from you al

[janineerrn]

Hi Again All,

Two things:

First, What tests have you all had?

Second, what medications are you on, pharmacutical, herbal etc... and what other things are you doing that help?

My sysmptoms are:

Sharp chest pain, constant nausea, always hot or chilling, leg cramps, my BP either goes up or down with sitting and standing. I cant bend over, I cant take a hot shower they bring on attacks. Tachycardia, numbness in my limbs. And fatigue.

I get attacks that are very unpredictable, sometimes 6 or 7 a day and then I can go 2 weeks with out one. I get a sharp chest pain, tachycardia, nausea and vomiting, then a "rush" comes over my body and i feel like Im going to drop dead. I sweat, my head aches, I get pain behind my eyes, my neck hurts, and it ends with diarrhea. (joy)

Any info would be greatly appreciated.

Janine

[briarrose]

I don't remember all the tests that I've had but the tilt table was the most important. I do have frequent blood tests to check my hematocrit and hemoglobin before I get my Epogen injections every week. I had my catecholomines, norephinephrine levels checked. Stress test, echocardiogram, doppler non-invasive study, Ekgs, CAT scans, MRI, Electro-conduction test (?), holter monitor, king of hearts, etc.

I take Epogen injection, IV Iron, Kerlone, Pepcid, Synthroid, Florinef, Neurontin, Zoloft, vitamins. Imitrex for my migraines. Hydroxyzine for itching. Sonata for sleep. Zofran for the constant Nausea. I where restrictive nylons. Drink 1-2 cups of coffee a day to help with blood pressure. Plenty of fluids, extra salt and I have a standing order for IV saline.

I've tried taking magnesium supplement, I had a bad reaction to Proamatine and one of the other SSRI's.

I have Mestinon here but haven't had the courage yet to try it.

I'm sure I left some out but it's my bedtime

[Eli6596]

Hi

The following are the tests I have had: EKG, holter monitor, Echocardiograms, tilt table, autonomic reflex screen at Mayo (plasma catecholemines, 24 hour urine for sodium and QSART which involves little burning sensations in arms and legs), blood work to check for thyroid, B12, electrolyte problems and anemia.

I take midodrine (total of 35 mg per day), toprol (200 mg a day), St John's wort for mild depression, mestinon 180 mg timespan, multivitamin, extra calcium and magnesium for migraines, alesse birth control pills continuously for suppression of menses, axert for my migraines. The right fit for you could be totally different though. Look at "what helps" in this website to get more ideas.

Biarrose,

I have to work up my courage to try a new medicine too. Mestinon does not stick around too long if you take the immediate release, so even if you do have a problem it would be short lived. The worst thing that could happen is upset stomach, so I you might take it with food. It does help me, so I have less roller coaster swings of symptoms during the day.

Karyn

[morgan617]

I've never made it to the big cities for tests, so have just had the basics, except for a tilt table. All the cardiac work ups and ablation,( don't go there!) I am so med sensitive, all I take is something for the inner ear, and hormones. My bp is going to give me a stroke I guess, but just can't do any of the meds and believe me, I've been on all of them. I just deal with it. But I don't pass out either, which is good, because I can't have salt. morgan

[briarrose]

Janine

I forgot to say that I have thyroid studies every 6 months because I had thyroid cancer in my early 20's and they treat me with thyroid supression. I had a pulmonary angiogram to rule out pulmonary embolism (the main killer in my family and the most unpleasant test I've ever underwent.) I've been on multiple beta blockers, toprol and propranolol were the worst for me. Atenolol worked for a year before it just stopped managing my symptoms.

It's kind of trial in error finding what works for you.

Karyn

Thank you very much for your input, it really does help give me courage.

I have had so many bad reactions from medications. I'm like the 1% of the population that has the rare side effects So it becomes harder and harder to be a guinea pig. It's like stepping in front of the train as it's coming down the tracks.

I have severe hypotension that started about 1 1/2 years ago. I've had my pressure drop as low as 60/40, had 2 litres of fluid to get up to 90/60 and now consistently run in the 90's. So when I have my menstrual cycle or get ill I often drop low 80's and there are times I can't get off the floor.

The doctors started me on Epogen injections 1 1/2 years ago w/IV Iron to help increase my blood volume and control my anemia. Since I started this treatment I've had great relief in my cognitive impairment, tinnitis, muscle cramping, energy level, headaches, circulation and better control of my temperature (I'm not constantly cold.) But it hasn't cured my pressure problem.

Oh well, I think tomorrow I will give the Mestinon a try

Thx

Steph

[janineerrn]

Thank You All!!

For responding and your understanding. Im having a really bad day, every time I move I throw up. My nausea is the worst symptom, most persistant anyway. I have been given everything from zofran to marinol.

I wont take the meds to control symptoms if they make me doped up. I want to live life, not sit in a chair like a zombie.

Have a great day all!!

Janine

[DSM3KIDZ]

I was just wondering, re: your nausea. Have you had the gastric emptying study? I have nausea - constant for months and when they did the study it showed slow gastric emptying (gastroparesis) one of the symptoms on the POTS page. There is meds for it. I can't tolerate them but maybe you could. The only thing that has worked for my nausea (sometimes meds but very sedating) is a chiropractor. I thought it was strange but gave it a try and now in the last month I've had nausea alot less frequent and alot less severe.I haven't had any this week at all . Maybe a flook but I'm excited I can get out and enjoy this nice weather with my 3 kids.

The chiro said if there is sublaxation than there is a lack of communication between the brain and the nerves which causes certain areas not to function completely (ex. stomach). It's helped me alot.

Hope I helped. I've been newely dx and don't know anything else about the meds involved yet. As for testing I had autonomic testing (tilt table, breath test, sweating, etc.)

[blackwolf]

dear Janine,

the only thing that has worked for my nausea is compazine, at 10mgs a dose, i get a little sleepy sometimes, but it beats getting sick.

blackwolf

[briarrose]

They gave me compazine once, Oh my gosh, I had this really weird reaction. I had the sudden urge to leave the department, didn't know where I wanted to go but anywhere was fine. I felt like I was coming out of my body. They gave me Benadryl to help reduce the reaction but I had that feeling for about 18-24 hours. Ugh...

[DSM3KIDZ]

I couldn't handle compazine either. I felt completely drugged and twitchy. I use promethazine 25mg but I cut it in 1/2. I still get alittle sleepy. The one that works the best with no drowsiness for me is zofran but I'm having trouble getting it. My G.I. said the others are fine. That ***** because I need to be alert for my kids. I will fight him on it if the nausea gets worse.

dayna

[briarrose]

Zofran works best for me too but it is hard to get and it's extremely expensive. Phenergan doesn't work at all.

[Guest tearose]

Hi and welcome again.

It sometimes is hard to list all the testing...it has been a long path.

Basically, depending upon your symptoms, a good complete Autonomic Nervous System workup could include:

cardiac tests, neurological tests, blood tests, EMG studies, Tilt table test, QSART sweat test, Thermoregulatory sweat test...possibly MRI and or CT scan to rule out other contributing problems.....you need a good "lead doctor" to help you figure this all out, in my opinion.

I'm not on meds cause I am too sensitive and I have another condition that makes taking large amounts of sodium prohibitive. I treat my symptoms by using a compression garment that is like a body girdle, then compression pantyhose, and in the past also a heart rate monitor. These days, I usually take a seat cane whenever I am out and about town.

I am seeking advise from a "conventional" nutritionist next week to discuss pros and cons of small doses of licorice root to try and raise my blood pressure a bit.

take care, tearose

[janineerrn]

Hi again and thanks all for your info.

I have had complete cardiac, neuro, and endocrine work ups, they ruled out pheo and carcinoid. Ive had tilt table (and failed it big time), ekg's, eegs, CT,s MRI, endoscope (both ends woo hoo), plasma mets test from mayo, thyroid, and a bazillion other blood tests.

I am currently taking Toprol XL, which makes me feel tired and crappy, synthroid even though my thyroid is normal, protonix, reglan, and I have marinol, klonopin, valium and a bunch of nausea meds. If I took all the meds they gave me Id be in bed in a coma.

I am going to see a Dr. Newby at Duke in Durham NC on May 16th. She is suposed to know about neurally mediated hypertension and POTS. So we shall see.

Thanks again for all your support, it is greatly appreciated.

Janine

[Guest Mary from OH]

Briarrose-

The reaction to Compazine that you had is called a paradox reaction. I had the same thing!!! It BLOWS your mind!! You need to list Compazine as a drug allergy!! It is actually dangerous for them to give it to you!! I actually tried to rip out my IV and leave the ER. I thought I was going out of my mind. I kept repeating the same phrase over and over. My husband and my mother had to restrain me until they could (finally get a RN to come). I got the Benadryl deal too!! Of course, in the same trip the same RN tried to kill me by hiding the CT dye in orange juice and trying to force me to drink it!! Thank GOD she put it in orange juice!! I am allergic to it, so I refused to drink it. She said it HAD to. Then she finally admitted that "something for my test was in it. Upon further probing, we found out it was the CT dye. I am anaphyactic to that!! She would have killed me!!! Boy was I MAD at her!! (Keep in mind I was also still recovering from the compazine so I thought everyone was out to get me!!)

Make sure you list compazine as a drug allergy!! It is SO commonly used!! It can often be used "without your consent" and then it's too late!!

Some good advice!

[Ernie]

I have had:

TTT, echocardiogram, EKG, EMG, EEG, Valsalva, doppler, catecholamines, Holter, adrenal MRI.

Ernie