juliegee

What other drugs are you taking?

Hi Karen,

Could he have been referring to a mitochondrial disorder. There are many different varieties of "mito" disorders and diseases. I know that POTS is a complication of some. Mitochondria work in our cells as a metabolic process... Definately, ask the doc for more information!

All the best-

Julir

Dayna & Cardiactec-

After just one pill? Or several? Did the "D" happen right away? Being a busy Mom (with a traveling husband), I'm afraid to try this!

Julie

Hi Jenny,

I definately believe that there is a genetic component to POTS and OI's. I have it as does my son. So do my mother and grandmother. Look carefully at your family history. Does anyone have a tendency to faint or have tachycardia? Or just seem plain tuckered out all of the time?

Since yours came on following anesthesia, perhaps it doesn't have a genetic component and will pass. My came on following a car accident. It has waxed and waned over the years. It is not too bothersome now. There is definately hope.

Julie

Hi Guys,

I've been suffering from severe constipation since June. I drink tons of water, eat loads of fiber and exercise a lot. Even Miralax isn't helping the way it should. My GI doc has prescribed Zelnorm. I'm a bit nervous to take it as I've read that it can exacerbate othostatic hypotension. Is anyone currently taking it? Has anyone had any problems with it? Thanks in advance for your help.

Julie

Sue,

I'm sorry that you're backsliding. This may not be "news" to you, but it really sounds like you've got the symptoms of Chronic Fatigue Syndrome. It's relatively common with POTS. What meds are you currently taking? My son has CFS, POTS and NMH and went from being housebound to functioning pretty well. He's actually attending school this year! There is definately hope. Do you have a good doc, who is working to tweak your regimen? Keep your chin up. I'm sending positive energy your way.

Hugs-

Julie

I have been salt loading for months, and my blood pressure seems to be up around normal most of the time in the docs office.

I'm not sdrome. ure about when I get up. It changes , but it still seems above the normal level.

I started walking . I started out with 5 mins. then added a minute a week. I was doing okay with that for a while. I was able to walk farther and it felt good.

Then I got sick from my period and a sinus troubles, and was in bed for a month.

I finallly started getting better from that and I got hit with another bad time during my period.

Now I am trying to get back the energy to walk again, but it sems like one day I can do it and then I won't be able to for days at a time.

And I am sooo tired awhen I wake in the morning. It takes all day to wake up. When I finally do, It's time to go to bed.

It's so frustrating cause I'll finally be feeling enough energy to do something and I can't bcause I don't want to keep myself up .( I'd pay for that the next day)

But I just feel like I have no energy all of the time. Sometimes it's hard for me to get out of bed. Let alone take a drive somewhere. I do manage once in a great while. I'll go for a short ride. But Then I feel lousy again the next day.

I'm just very scared that this is getting worse.I dont' want to live my whole life in bed.

I dont have my own family and don't have any friends visit so I am very alone. When I get a ride out to the doctor's, it feels so good just to be around people.

I just a so frustrated and scared because I thought things were maybe improving a little. And now it seems I'm back to square one. Has anyone else gone through this Have you ben able to build your strength back up?

Sue

My son has POTS and NMH(neurally mediated hypotension). Many do. Sounds like you may, too. his is controlled really well with drug therapy. I hope yours can be, too.

All the best-

Julie

Dear Group,

When I lie down and then sit up, my systolic blood pressure drops as much as 39 points, and my pulse increases as much as 50 points. Is it typical of POTS for both blood pressure and pulse to change so much. Some days, the pulse does not go up by 30 or more when standing. But it is true that usually, despite the title of this thread, that the pulse goes up by more than the systolic blood pressure goes down. Thanks, John

As the Mom of a of child with an autonomic dysfunction, I know how hard your Mom must have fought for you. And then after getting a diagnosis, she struggled with letting you be normal and "overdoing" for you. It's impossible to always get it right. No one truly understands what it's like to walk in your shoes. Regardless, you are a sweet daughter and incredibly noble to print this retraction. Your Mom would be proud of you. And, so am I!

As far as things getting worse, you need to look at your treatment program. (I hope you are on one.) My son's has to be frequently tweaked depending on the symptoms du jour. Best of luck to you.

Hugs-

Julie

Hi Jess,

Yes, I've been evaluated for sclerodrma numerous times. I also have severe Reynaud's and problems with my esophagus. Usually bloodwork is the first step. If your ANA's are high, your rheum will probably do more checking. Google CREST syndrome. It's much more likely (hopefully) that that's what's going on. I have many signs of scleroderma, but my ANA's have never been high. Thank God. Scleroderma can be a scary disease. Please keep us posted on your status.

Julie

Hi Radha,

Lexapro has been a godsend for my son. He started on 10mg, which took care of the anxiety and helped balance his autonomic nervous system. At that dose, it helped him to able to eat (he has motility issues) but didn't necessarily increase his appetite. He has upped his dose to 15mg per Dr. Rowe's instructions to help with energy. (He also has CFS.) It has, but at 15mg, it has also increased his appetite BIG TIME. I would guess that 10mg might do the trick for you w/o the pesky side effect of munchies. Best of Luck to you.

Julie

could any of you recommend an anti depressant that would help anxiety and depression without increasing epinephrine, actually i want something to decrease epinephrine, and would not cause alot of weight gain......thanks for any help

radha

Sophia-

I hope I'm not too late replying to this.... I was also told that I needed to have a hysterectomy. I had a huge fibroid- 10cm (or maybe several smaller tumors stuck together). They were causing bulk symptoms. I was having trouble urinating and having BM's. I also bled a ton nonstop. Instead, I had a relatively new procedure, that was much less invasive- but took care of the problem. An interventional radiologist embolized the arteries feeding the tumors. They have shrunk by more than half and my periods are much lighter. He basically cut-off the blood supply to the tumors.

Many people feel much better after a hysterectomy, but not everyone. This is major surgery, esp. for someone with POTS. In my research, I encountered many women who took years to recover. And a percentage, who no longer enjoyed sex following the sutgery. All stuff to consider.

Best of luck to you. If you want more information regarding the embolization, send me an E-Mail.

Hugs-

Julie

Hi There-

Try not to worry to much- easier said than done. I'm pretty sure you can't have an MRI. Many of us here have small masses in our brains that are harmless, pineal cysts. I would get to a neurologist- pronto. I pray your mass is nothing serious and NOT the cause of your chronic headaches. I'll keep you in my thoughts and prayers.

Julie

AJVDK,

I wish you the strength you need to make it to next week. And healing thoughts your way.

About the ER experience, I wonder if the doctors are just "in training" and do not really know enough about everything they encounter?? If that is the case, I wonder why "consults" aren't done right there with someone who DOES know...for example, a consult with a neurologist on call. I suspect it is a money issue or a time issue. Maybe if a doctor on staff at the hospital called ahead before you got there, they would pay more attention to your case?

Maybe all of us should ask our "primary" POTS doc ahead of time HOW to have a productive experience at the ER.

For example, one time I called my gastroenterologist because I was having a pain in my abdomen. HE told me to go the the ER and it turned out, that when HE was there (later on), he examined me. His office happens to be adjacent to the hospital where he works so it was relatively easy for him to make a stop in the ER. I think if your physician gives them the heads up, HE can tell them what tests he wants done or what he wants to do.

Just an idea. I don't have any ideas about what to do if your physician does NOT suggest going to the ER.

I was thinking that maybe a call into the physician FIRST would get them to take you more seriously once at the ER. When talking to the doctor you could say, "Should I go to the ER?"

I do not know your particular circumstance, and I only want the best for you and to be relieved of your pain ASAP. Healing thoughts your way. (It sure sounds like the Procrit was the beginning of this saga for you.)

Hi There-

I'm so glad that florinef seems to be working for you. You are very smart to start slowly. My son started the same way. he began with 1/4 of a .1mg tablet and waited a week, then 1/2 of a .1mg tablet and waited a week, etc...until he worked up to a therapeutic dosage of .2mg daily. Florinef has been a miracle for him. He also takes 6 Thermotabs and 15mg of Lexapro. This combo for his OI has him feeling almost normal. I pray that florinef will be your miracle. Keep us posted on your progress.

Julie

I tend to be one of those people who will try ANYTHING rather than medication. I get side effects from almost everything. I can count on it.

So, with that in mind, you can understand why I haven't taken anything for my POTS since my diagnosis four years ago. If I did try any med, it was usually one or two pills (or two weeks at the most), and then I'd quit due to the side effects.

I have tried to do exercising including legs, sleep clinic, water and salt loading and keeping my food intake to healthy foods only.

But, my "natural method" fight is over. After the last two visits to my neuro, in June and now, he could SEE by my pulse pressure how poorly I was doing. I also told him I'm getting worse, and he now had my blood volume results in front of him.

So, I took my first florinef this AM. After reading some previous posts, I took it at 5 AM with food and then went back to bed at 6 AM. That is the routine I'm usually in with feeding my animals and all. I took 1/2 of a .1 mg pill and it's the generic form.

Well, I kind of felt like I was speeding and that my body did NOT want to sleep, but I know I didn't get enough sleep so I lay there and I did fall asleep for a bit.

Now that I'm up, I actually feel like a human, albeit a bit "wired". I don't feel like I have any orthostatic intolerance symptoms. I hope this keeps up.

I spent four years avoiding meds. I dislike side effects and the potential for harm (like losing more bone mass which I can't afford), but, hey..... it's obvious to me that I do need something.

I will definitely try to continue on this course of therapy. I told the doctor that I wanted to be more aggressive in my treatment. After four long years and worsening symptoms, I am well aware that this isn't going away and I need some outside intervention. Boy, can I be stubborn!!!!

Anyway, here's to meds from a "high as a kite" POTS patient!!

It sounds like you've had a reaction to more than one drug. Which one specifically is giving you a problem? I know many with dysautonomia have to start with micro-doses and wait a week or so before upping the dose to a more therapeutic level. for instance when my son started florinef, he started with 1/4 of a .1 tablet. Ten days later, he moved up to 1/2 of a .1 tablet. He eventually worked his way up to .2mg or 2 full tablets a day. Going slowly gave his body a chance to adjust and respond to the medication.

All my best-

Julie

I think I have POTS, and I know I have Mitral Valve Prolapse Syndrome and I know I have dysautonomia. I have a HORRIBLE drug sensitivity that is beyond words... What would you do if it was literally killing you are ruining your life? I HAVE to get rid of this horrible drug (& herb) sensitivity, so please help me find a way. By the way, this sensitivity is NOT allergic, the effect of the drug/herb is just exaggerated 1000x's or so.

Hi John-

I a relative newbie, but I've followed Linda's saga. Have you suggested or asked the doc's to look into mastocytosis? It seems to connect the dots and explain all symptoms. Best of luck.

God Bless-

Julie

Linda wanted me to update all of you. She's discouraged after her first doctor's visit at Mayo. She saw a gastro doc who specializes in esosinophil disorders. The told us that he thinks he already knows what's wrong with Linda: eosophagitis, irritable bowel and severe allergies, although he admitted that he doesn't know what would be causing all of her symptoms. Uh, that's why we're here. He said he could run us up a big bill with testing and will probably be at the same conclusion next week. We're very discouraged. We know, we've only seen one doctor so far, but I guess he didn't set a very good tone for the rest of the visit.

She had a scope done yesterday, which was very hard on her, her blood pressure was running 70;s over 40;s last night after the scope, and he said that they didn't look at her entier system, so they ahve to do another one, along with a colonopscipy. Now, I'm back in Ohio (had to come home or lose my job), so she's at Mayo by herself, and the docotr wants to do two scopes on the same day, with her POTS. She can't be there by herself and have these tests. We're both very upset. Does anyone have any suggestoins?

The gastro said that he saw that Linda had a very good workup by a neurologist at Cleveland Clinic. We said, "She's never seen a neruologist." He said well, who diagnosed her POTS? We said a cardiologist, and she doesn't do follow up care. He said, so I supposed you want to see a POTS spcialist, then? We said yes, so we're on the agenda to see Dr. Low. It will be a long wait, from what we're told.

She is to see an allergist immunologist and she's to have some allergy testing done. This gastro doc is doing some testing for mastocitosis and some other diseases, too.

Sorry to be so glum right now. We just didn't get off to a very good start, I guess.

Tell more later.

John

Anyone here from Rochester who could visit Linda while she's there, or even stay with her for a few days during her scopes? Please let me know.

John

I just recently learned that combining Toprol with Lexapro can cause grand mal seizures. Please be careful not to mix the two!

Julie

When my autonomic problems are full-blown, I also have trouble swallowing. At times, I almost feel as though my throat is closing. (it isn't!) I've also had esophogeal spasms. This symptom has totally gone away for now- it's been years. Whenever I begin to feel it returning, it prods me to s-l-o-w down and take care of myself. Relaxing (believe it or not) seems to help. I chalk it up to the whole autonomic thing. For me, it's just a nuisance. I pray the same for you.

Julie

I can't specifically say "what" in the flu shot gave him concern. He did say that if you've had a flu shot, since being DXed w/ an OI (POTS, NMH) and you didn't have a negative reaction- you'd probably be OK. Otherwise, he seemed to advise caution.

Julie

Mack's Mom,

I was just curious what in the flu shot Dr. Lowe thought reacts with OI patients...I've done some research and found out that the vaccine basically just contains various strains of the killed virus.

Do any of you know why OI patients tend to be more reactive to the shot? Is it just because we're more reactive in general? Or is it something specific?

I think Nina mentioned mastocytosis as a possibility. Linda Joy sure seems to have many of the symptoms. I hope her doctors are looking into that. She is in my prayers.

Julie

I just wanted to say that I hope Linda finds a doctor to help her....She's in my thoughts...

Jacquie

Hi Lori,

Maybe your vomiting/nausea is a symptom of your POTS esp. as it seems to occur when your HR is so high. But, one other thought is that maybe you have a motility problem. Unfortunately, they are relatively common with autonomic issues. The first test that your GI can do is a gastric emptying study. Try to do a 4 hour test- they are a bit more reliable. If that comes back normal, you may want to look into motility studies. Best of luck.

Julie

Hi everyopne. I am some what new to the forum and had a few questions.

I am having problems and have been for some time, with throwing up after some meals. I went through many tests, MRIs, etc. and they found nothing.

It seems to happen when my heart races to 160+ after a meal. I have been experimenting with different things that could trigger it. Larger meals, not being able to lie down after eating or very rich foods.

Does anyone else have problems with nausea or throwing up? Could these be symptoms of POTS?

Any feed back would be great.

Thanks!

Lori

My son is treated by Dr. Rowe at Hopkins for his dysautonmia. At Mack's last appt., I asked Dr. Rowe his opinion on flu shots for patients with orthostatic intolerances. He was hesitant to recommend a flu shot. He said to proceed with caution. Flu shots have worsened many of his patients. He seemed to indicate that Mack was safer taking his chances.

Julie

I'm getting one and thanks for reminding me. I'll have to look up where they are being given. The grocery store here gives them before my doctors do. I've gotten a flu shot each year for the last 34 years (I think).

Hi there-

Wow! Have they told you that you need brain surgery? I'm the other member with a pineal cyst... I posted about it a while back. My neurologist said that mine didn't bear any relationship to my headaches, numbness, autonomic issues, etc. Are you sure that yours accounts for your symptoms? Pineal cysts are often incidental findings on MRI's. Yours would have to be blocking your cervical/spinal fluid from circulating or otherwise bulking into other territory to need surgery.

If this does account for yor symptoms- how cool to have a solution. But, I understand the pineal cyst is in the center of the brain and hard to get to. Please consider surgery as a last resort and get several opinions before you proceed.

Most importantly, keep us updated. I'm sending prayers and positive thoughts your way.

Julie

So a nurse called me the other day to tell me that I do indeed have a cyst on my Pineal Gland. I have an appointment Monday afternoon and Tuesday morning to talk more about it. I was looking it up and it would explain alot of my symptoms...not all...but a good deal of them. (My Cardiologist could figure out why I've been hallucinating, but this explains it.) I'm terrified of the thought of brain surgery, but really excited about the thought of maybe feeling normal for the first time since I was a kid...even if it takes a rediculously insane brain surgery to get there. I hope that sugery will take away at least my migranes, vertigo, and hallucinating...maybe even my passing out! I know I have the tachycardia and nerve problems, but I'm excited that I might be able to get even a little bit better!

I get that chest tightening, too. Singulair totally relieves it.

Julie

hmmm...maybe my high histamine levels are causing the headaches...never thought about that.

Hi-

I've also got a pineal cyst. It was found during an MRI of my brain. I think it's big enough to almost be blocking my cerobrospinal fluid from circulating freely. It really freaked me out at first. I had follow-up MRI's every 6 months for a while. But, it never grew. I saw a specialist at Emory in Atlanta who speculated that it might give me problems when I was a little old lady. (I was in my early 30's at the time.) He told me to frequently roll my eyes back in my head . As long as I was able, the cyst wasn't growing. I've been following his advice. i haven't done any further MRI's. I think pineal cysts are relatively commonly and extraneous findings on MRI's.

Definately, follow your doctor's advice and look into it. Hopefully, it'll just be one of those weird thing you get to live with...

All the best-

Julie

So I got an MRI last Friday, and they called me up on Monday to tell me they found something abnormal with my Pineal Gland. They wouldn't tell me anything else about it, so I had to go back in this past Friday and get another one with extra scans....I don't go to my Dr. to discuss the results of my MRI until next Tuesday. My question was, has anyone else had problems with their Pineal Gland?

Something wierd about the dye for the MRI as well, it's the first time I've "passed out" laying down that I've been aware of. They came and put the dye in me, and about 2 minutes later I was counting the little lines in the light above me (because I was bored) and suddenly I jerked waking up. I was wide awake before that, so I don't think that I fell asleep. It was totally a surreal experience. I had really bad tachycardia at the time, and I know that some people have problems with needles, but I'm definitely not one of them (I think needles are fun! hehe). It felt like I wasn't even in my body. I dont normally use a wheelchair but I literally couldn't even stand up after it...which was wierd because I'd had an MRI the Friday before, and had no such problem.

Anyways, does anyone have any ideas?

When I first did my poor man's tilt table test, my son took my pulse every few minutes. After about 4 minutes of standing, my son was unable to get a pulse in either wrist, or ankle. He had to resort to the artery in my neck. I think that's a symptoms of POTS.

Julie

The nurse who performed the eletroctrocardiogram on me said that something was definitely wrong with me, as she had trouble finding my pulse!! she said this happens with old people, but she has never seen it in a young lad like myself

what could it be? low blood volume? my doctor said this was "nothing"... haha, but he also said that dysautonomia was nothing, so I would be naive to believe him